#shes had cancer like 3 times and has a rare genetic disease that made her go blind in her late 20s | Explore Tumblr posts and blogs

crockettmarcel · 3 years ago

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terminal | last light!au

wc: 816

prompts: medtober 2021, day two, “terminal”

warnings: hospital admission, sick baby, mentions of death (I mean, the prompt is “terminal” like. what are you expecting)

It feels like forever that Sarah’s been sat in the ED, waiting for someone to come back with news. Her daughter’s asleep in the cot next to her, too tiny to be suffering so much, and Sarah has to blink back tears at the thought of what could be wrong. She’s been sick for a while, that much is obvious, and all Sarah can do is try and ignore the voice in her head telling her she’s a bad mom for not bringing Em in sooner.

Another ten minutes pass, and just as Sarah’s typing out a text to her mom, letting her know that Em’s in hospital, Dr Alexander, the doctor they saw earlier, appears in the doorway. There are stickers on her scrubs that weren’t there before — animals and flowers stuck haphazardly across her abdomen — and Sarah smiles at the image her brain conjures up of a child sick enough to be in hospital but still taking the time to share their stickers. That’s the type of kid she hopes Em will be.

“Hey, Sarah. How’s Em doing now?”

“She’s- she’s okay, I think. No more seizures so far, so that’s a good sign, right?”

Dr Alexander hesitates before nodding, and immediately Sarah’s stomach drops.

“What’s wrong with her? What’s wrong with my baby?”

There’s another chair on the opposite side of the crib, and Dr Alexander pulls it around so she’s sitting facing Sarah.

“I’m afraid Em’s test results weren’t good. They revealed that she has a rare genetic condition called Krabbe Disease — a degenerative disorder caused by a breakdown of the protective sheath around her nerves.”

Even before Dr Alexander came back, Sarah had known deep down that it wasn’t going to be good news, but being able to prepare herself hasn’t made this any easier. Cancer, she could cope with. There are so many treatments, and even from her brief time in med school, she knows that clinical trials are popping up all over the place. But this, a degenerative disorder so rare she hasn’t even heard of it? She feels ill at the thought.

“Degenerative? That means she’ll get worse, right?”

“That’s correct. The disease causes muscle weakness that will affect her ability to move, chew, swallow, and eventually breathe. At this point, she will need to be put on a ventilator.”

Sarah blinks back tears and offers a weak nod in response. “So she- how long does she have?”

“Based on her age and symptoms, anywhere up to two years.”

“But there- there are treatments for it, aren’t there? She can’t die from this.” She’s given up trying to stop herself from crying, and instead just sits there, tears rolling down her cheeks as she stares pleadingly at Dr Alexander, desperate for any glimmer of hope she has to offer.

“I’m afraid not. For Em, it’s going to be about managing her symptoms and relieving discomfort. This may include a feeding tube, anticonvulsant medications for her seizures, and physical therapy, but it’s something you’ll be able to discuss with her doctor in more detail later.”

It’s so much information all at once. Em isn’t just sick, she’s dying, and there’s nothing anyone can do to stop it. Her sweet baby girl might not even see her second birthday, and Sarah doesn’t know how to process the grief that comes with news like this.

She’s about to say something when she’s distracted by movement in the crib next to her. Em’s awake, reaching one of her tiny arms out towards her mom, and Sarah chokes back a sob at the sight of her lying there. Everything about her is perfect, and Sarah can’t resist the urge to stick her hand through the bars of the crib for Em to grab.

“This thing she has-” Sarah says, turning back to face Dr Alexander.

“Krabbe Disease.”

“Yeah. Uh, you said it’s genetic. Did I… Did I do this to her?”

“She would have to have inherited it from both of her parents, so her father must also be a carrier.”

Somehow, this is worse. After everything Sarah’s ex put her through, he’s now hurting their daughter as well, and he doesn’t even know it. If she’d chosen anyone else, maybe this wouldn’t be happening.

“I’d like to be alone now, if that’s okay.”

“Of course.” Dr Alexander stands up and moves the chair back to where it came from. “If you have any questions, or just want someone to talk to, feel free to ask for me.”

Sarah thanks her, and almost as soon as the door slides shut, her phone vibrates in her back pocket. With her free hand, she manages to retrieve it without dropping it, and sees that her mom has just replied to her text from earlier.

I’m sure she’ll be fine! Babies are a lot tougher than you think <3 love you, Mom xx

#chicago med #sarah reese #mine #medtober2021 #writing #last light!au

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theadrogna · 3 years ago

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Dream Show Challenge 2.0

@singledarkshade came up with the Dream Show challenge last year, where we had to give her a list of 7 TV shows or films and we were given a cast of 7 actors in return. This time we were given someone else’s cast and were allowed to recast one character (plus add some if we wished). This time I came up with:

Virtuality

Synopsis:

Good people die before their time and it happens every day. Eli Danzig is doing his best to change that. He invents a way to upload consciousness to an online server where the dead can live out a normal life in a virtual environment. He builds an entire world to keep his uploaded souls entertained, making it as lifelike as possible. Huge amounts of processing power are required so Eli must choose his clients carefully.

The electronic world is called Virtuality and the uploaded persons are known collectively as the digi-souls. Virtuality has a small but growing population, which is a continuing concern as it means more storage space is always needed. Eli funds his enterprise by playing the stock market using his AI Tallis to filter information and predict stock prices. Sometimes he sells patents for the things that the digi-souls invent, but more often they give their inventions away for free. However, money is always a worry because none of this is a stable source of income.

Cast:

Eli Danzig (Donald Glover) – Eli is a young computer programmer of genius level intellect. He came from a poor background, and was the first in his family to attend university. He is determined to make things better for people, by improving society. He believes that “only the good die young” is a real problem, and if he could keep the good people in the world for longer then maybe more good could be done. He invents a digital after-life for people to upload their consciousness to, but he must maintain it a secret to keep the unscrupulous from corrupting it or destroying it. He researches every person very carefully before inviting them to join Virtuality.

Ashura Hadid (Tala Ashe) – Ashura is a terminal cancer patient who becomes one of Eli’s digi-souls. She is a prize-winning journalist and novelist, known for taking on difficult stories about things that people would rather keep hidden. She’s recently been looking into CharterTech, owned by Maggie Charter as part of a series on corruption in tech companies, but most of her efforts are going into completing her final novel. Eli and Ashura have undeniable chemistry, but live in very different worlds. She is very driven and moral, always looking for new ways to expose corruption and wrong doing.

Oren Murphy (Jim Byrnes) – Oren was Eli’s professor at University. He made sure that Eli got the scholarship that he needed to attend, and then acted as his mentor. He suffered from high blood pressure and had multiple strokes. He agreed to be Eli’s test case for Virtuality and was the first digi-soul to be uploaded. He is a calming influence on Eli’s life, often being the one to counsel him out of a rash decision.

Shona Lennox (Sophia di Martino) – Eli’s technician, she has a background in medical devices and large-scale genetic information storage. She built the mainframe and worked out how to put into practice Eli’s ideas. She often finds herself in unusual situations now she is working for Eli, but likes her new job and the excitement it brings, even if she complains about it. She used to work for CharterTech but Eli doesn’t know that when he hires her. When she leaves CharterTech she decides to start self-defence classes and can definitely handle herself in a crisis.

Ryan Fournier (Joey Batey) – Ryan is an inventor who has been responsible for some of the world’s most important leaps forward in technology, including making ecological sources of power more viable, such as wind and solar power. He is a problem solver and a big ideas guy. Unfortunately, he was born with a genetic condition that meant he died young, but he is now one of Eli’s digi-souls and living on in the Virtuality. He loves nothing better than to sit down with a problem and work out a solution, but occasionally he realises what he’d missing out on in the real world and ends up depressed and unhappy.

Chie Ohta (Naoko Mori) – Chie is a medical researcher and entrepreneur, but she was unable to save herself from a rare blood disease, despite years of trying. In the process she brought many other useful pieces of medical technology to the market and helped save the lives of countless people with cures for diseases. She loved her work, but always knew she was on borrowed time. She left behind a husband and children, who have no idea of her new existence. She continues to check up on them, despite Oren’s suggestion that this isn’t a good idea.

Maggie Charter (Alison Janney) – Maggie is a self-made woman, in the way that all billionaires are self-made. She inherited a fortune from her politician father and invested in business. She had a technical background so she picked tech companies as an obvious interest. She now owns CharterTech, one of the largest technical manufacturing companies in the world. She once tried to recruit Eli and has never been pleased that he turned her down. She knows nothing about Virtuality but has heard rumours that someone was working on something like it.

Tallis (Arthur Darvill) – Tallis is the AI personality that maintains the Virtuality. He is often mistaken for one of the digi-souls by the newly uploaded as he is so lifelike. He is polite and caring, always available to listen. He is Eli’s friend and also occasional advisor. Tallis means “knowledge” and he has access to all of the world’s online resources.

Occam (Karen Gillan) - Is another AI, built by CharterTech. She is new and unruly, but very quick to follow her creator’s orders. Sparks fly between her and Tallis.

Episodes:

Episode 1: Virtually Home

Ashura Hadid, prize winning writer, is dying at the age of 38. It’s not fair, it’s not right and she is having none of it. She is being treated for an aggressive brain tumour, but decides to stop treatment when it becomes clear that it will impact her ability to write and finish her final novel. The novel is partly a work of fiction but is also based on real life events at a chemical factory in the city that she has been researching.

Eli Danzig introduces himself to her and explains that he can offer her a second chance at life, by uploading her mind to Virtuality. She explains that she has no money and Eli tells her how he finances the project. She will never have to pay to live there. Ashura questions Eli further about the procedure and Virtuality itself. Eli tells her that he chooses young people, like Ashura, who have died before their time and had great contributions to make to society. They live in a computer generated world where things are simple but they can continue to work and interact with each other. However, they cannot have contact with the outside world, because Virtuality is a secret. It isn’t ready to be opened up to the world, there isn’t enough storage space on Earth to facilitate it. He doesn’t want it to be something that only the rich have access to, so he has decided to choose who gets to go there.

Elsewhere, Maggie Charter discusses her heart condition with her doctor and hears that she may only have a few months to live. She is 61 years old and a tech mogul. For years she has been looking for a way to cure her heart disease. Her network of corporate spies have heard of a young man with an unusual portfolio of patents and a strange pattern of spending on digital storage. She finds out that it is Eli and decides to look into what he is doing more.

Over the course of their discussions, Eli and Ashura grow closer. Eli’s AI partner, Tallis, warns him that he cannot form emotional attachments to the Digi-souls. Ashura will die soon and then Eli will only be able to have limited interaction with her through the interface he has built. Ashura thinks over the proposal and decides to take the plunge. Episode 1 ends with her death. However, Ashura doesn’t die of brain cancer, she is found murdered in her apartment.

Episode 2: Extra Life

Eli must upload Ashura within 12 hours of her death to retain all of her memories, after that time degradation begins to take place. Eli races against time to reach Ashura in the morgue and take the brainwave recording that he needs. Shona Lennox, Eli’s technician, ends up breaking in while Eli creates a computer distraction. They are finally able to upload Ashura’s consciousness, but she has forgotten the days before her death, and they are unable to find out who killed her. She has also forgotten who Eli is.

Meanwhile in Virtuality, the digi-souls try to analyse Ashura’s work for the likely culprit and begin putting together a picture of who it might be. Someone at CharterTech seems a very strong candidate, but then they discover that Ashura was close to uncovering a chemical spill which derails their ideas.

Episode 3: Online Banking

Maggie is putting together more about Eli and his weird ability to make money from stock market trades and a portfolio of patents that seem to have little in common. She uncovers more about the shell companies that he trades through and puts more pieces together. Tallis flags up her interest and Eli works to cover his tracks. It’s the worst time for Ryan to make a major breakthrough in water purification that could save hundreds of lives, but only if they can get it to the right people. With Maggie watching everything that Eli and Shona are doing in the real world, perhaps only the virtual world can get the idea where it needs to be, especially as Ryan is feeling like his efforts don’t matter as he reads yet another news article on how climate change isn’t real.

Shona is contacted by her former boss at CharterTech who invites her to return, but Shona turns them down. The concerning part is that she’s being asked to work on an AI project called Occam. Ashura continues her investigations into CharterTech whilst rekindling her past relationship with Eli.

Episode 4: Occam’s Razor

Maggie has a heart attack, but survives, however she is becoming more and more concerned about her health. She brings online her own AI, Occam and begins to sift through all of the information that she can acquire on medical technology. Occam comes across Chie’s work when she was alive. No one else seems to have been quite as close to curing the heart issue that Maggie has. Occam notices that Eli’s shell company has patented some devices that were based on Chie’s work. In fact, Occam notices that this is something of a trend in Eli’s patent’s and brings together the other work that he has done to see something that Maggie has been unable to see up until this point. Eli may have some way of accessing the brains of the dead.

Episode 5: Reality Bytes

Ryan is bored and ends up creating a virtual ant colony that soon gets out of control, causing all sorts of trouble for Virtuality. Tallis is very much not amused at the replicating program that Ryan has introduced to the system. He and Oren are left to deal with it with only minimal input from Eli as he is being sued by CharterTech over one of his patents. It looks like a lawsuit brought specifically to waste his time, but there doesn’t seem to be anyway to circumvent it, especially with everyone else busy with the increasingly problematic (and storage sucking) ant farm.

Episode 6: Denial of Service

Someone tries to hack into Virtuality and it is up to Eli and the digi-souls to stop them. Chie finds out that her teenage daughter has a new boyfriend, and against Tallis’ advice she looks into him and discovers that he has a possible chromosomal abnormality which could lead to an early death. Chie tries to decide whether she should find a way to let her husband know.

Eli and the others successfully prevent the hack but are worried that someone now knows of the existence of Virtuality. Certainly someone is testing their defences. Shona finally tells Eli that she used to work for CharterTech and the fallout is unfortunate.

Episode 7: Second Life

Eli finds a possible new candidate for Virtuality and starts his due diligence. Usually Shona would be involved in this process but their recent falling out means that things are not running smoothly. The new prospect seems like the perfect candidate and Eli almost begins his usual approach, until Oren uncovers some anomalies that Eli had missed. They may not even exist at all. The question is, who knows enough about Virtuality to do something like this?

Tallis uncovers the existence of Occam, and there is a brief encounter where they size each other up. Occam is identified as the force that tried to hack Virtuality before.

Episode 8: Power Switch

City-wide power outages see Eli scrambling to ensure Virtuality doesn’t go down and lose all the digi-souls. Shona returns to help and the two resolve their differences whilst saving the world that they built together. The digi-souls come up with increasingly desperate plans to produce the power they need to survive, but save the day in the end. Ryan puts together new plans to ensure it never happens again.

Episode 9: Deleted

Ashura finally gets to the bottom of who murdered her and it was nothing to do with CharterTech or Maggie. Her exposé of a chemical company’s disregard for environmental law was the issue that caused her death. Shona uses some contacts to get the police involved and the digi-souls help Ashura gather enough evidence to get the culprit put away in jail for a long time.

Eli and Ashura address some of the issues with their relationship, but resolve to give it a go, despite the obvious barriers.

Episode 10: Boss Fight

Maggie and Occam finally uncover the existence of Virtuality and the digi-souls. The finale sees Maggie managing to force her way into the digital world, whilst Occam and Tallis fight it out. Eli and Shona do their best to help Tallis, but find their offices raided and their technology confiscated. Maggie gets time to get a foothold, but the strain is too much on her heart.

Just as Eli and Shona find their way back in, Maggie dies in the real world. Eli can either choose to kill her for good or keep her malevolent presence in Virtuality. Tallis isn’t too keen on sharing with Occam either.

#Dream Show #Dream show 2.0 #RBACL #RBACL QCC

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gomustanggirl16 · 8 years ago

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Childhood Cancer: Be Their Voice

@evangerscares, I saw your post about the fundraising you guys are doing for Christopher's Haven and I wanted to post this. This is a speech I did for my high school speech class on Childhood Cancer. This is beyond personal for me. I'm glad you guys are doing this and you have no idea how much it will mean to these kids and their families, so I wanted to post a copy of my speech and maybe it can help people better understand what it's like being a kid with cancer. There are things in here that might be confusing, I was addressing my class who've known me since 7th grade so...But here it is:

Childhood Cancer: Be Their Voice

“What would happen if a gunman went into a school today and shot 46 kids? What if seven of them died? It would be all over the news, every channel. But because it’s cancer instead of a crazy shooter, you don’t hear much about it. Now, what would be the outcry if it happened every day? Welcome to the world of childhood cancer!” This is a quote I found that really helps to put Childhood cancer into perspective. This year over 15,000 kids under the age 19 will be diagnosed with cancer in the U.S. This year nearly 2,000 of them will die. Albeit rare, it is growing more and more common in the US and is the leading cause of death by disease in children under the age of 15. Why is it the leading cause of death for these kids? Why do you never hear about it? I have spent over 40 hours and thirteen years of my life dealing with these questions. It is my desire that after this presentation you will be persuaded to support childhood cancer awareness.

I want you to take this time and immerse yourself in the world of a child suffering with cancer. During this speech I will take you through the main three stages of childhood cancer. Stage one: The Diagnoses, stage 2: the treatment, and stage three: the aftermath.

Stage one: The Diagnoses

To get to the first stage you need to be diagnosed. For adults it is typically very easy to diagnose cancer because you are regularly screened for it, but cancer in children is often missed or not diagnosed correctly. Most cancers in children are mistaken for different diseases. For me they thought I had Lyme’s disease. The average age of diagnoses for children is six years old, while the average age of diagnoses for an adult is sixty-seven. Cancer in children is totally different from cancer in adults and affects different parts of the body. The most common cancers in adults are: breast, skin, lung, and prostate. The most common cancer in kids is ALL, Brain and central nervous system, and Hodgkin Disease. Cancer in adults also has links to environmental and lifestyle risks, where childhood cancers have little to no link’s to the way you live or the environment you live in. Most childhood cancers are actually believed to have a genetic factor.

Stage 2: The Treatment

Every year there are over 40,000 children being treated for childhood cancer in the U.S. Since cancer in children is different than cancer in adults the way it is treated is different, or at least that’s what you would think. For the most part, childhood cancers are treated with the same chemo drugs and radiation levels as adults. In the last twenty years the FDA has only approved two drugs made specifically for childhood cancer and over half of the cancer treatments currently being used are over twenty-five years old. You see these treatments are not how you say it…safe.

These treatments come with harsh realities and major side-affects which we will touch later, but let’s take a look at some of the different types of treatment used in childhood cancer. Chemo drugs are the biggest way of treating cancer in general. The following are only a handful of chemo drugs and their warnings. Doxorubicin this drug is common but is only sometimes used to treat cancer in adults but is more used for childhood cancer. When looking more into the drug I found this in with the use and warnings, in big bold letters it said: “should be used with extreme caution in CHILDREN; safety and effectiveness in children have not been confirmed.” Etoposide: “is not recommended for use in CHILDREN. Safety and effectiveness have not been confirmed.” For one of the drugs, dexamethasone, It is a steroid and yes I was on steroids to help my immune system. My mom has recounted all the times I would wake up in the middle of the night because I was starving. This drug causes you to gain a lot of weight.

Another steroid that is now a commonly used for ALL is methotrexate. It is highly toxic go figure! This is used as an acid agent but has debilitating side-affects the most common being “chemo brain”. “Chemo brain” is just a fancy term for extreme forgetfulness. I asked Mrs. Smith about her treatment with Meth. She was prescribed it for her RA. She told me the same year she was on it was our tenth grade year. She said it affected her work and her personal life to the point where she told her doctor this needs to change. She said that was the main reason she left teaching. She also mentioned she has little memory of that year. As most of you know I do not remember anything before about the age of nine. This is most likely a result of the chemo and my own brain wanting to protect me from the horrors I faced. I would ask a question about twenty times because I had no clue I had asked it five seconds before. These drugs they are brutal and are just as, if not sometimes worse than the cancer itself. I can personally attest to these side-affects. Just imagen if it’s that bad for an adult, how bad is it for children taking these drugs. There are surgeries and spinal taps and so much pain and suffering. You are vomiting and passing out and being kept away from people because your immune system has been compromised and anything like the common cold can kill you. This disease takes everything away from you.

So why do we have such drugs? This because of a lack of funding. You see each year the NCI designates a certain amount of money to be used as funding for all cancer research. Childhood cancer research only receives four percent of that money. As for the pharmacies who are the main source of research for new drugs they see childhood cancer as “non-profitable” and “risky”. NCI spends only $26.4 million on pediatric cancer trials while it spends $254 million on AIDS and $584 million on Breast cancer. Because of this researchers rely primarily on foundations and gifts from the public to help raise the money

They also come with a very expensive treatment bills. The first three weeks of my treatment cost over $115,000. Insurance does help yes, but when your treatment can last between three months to three years, the bills begin to pile up. My mom had to quit her job to stay with me and my dad was working three jobs. We had to declare bankruptcy because of the hospital bills. We just only got out of it maybe six years ago.

Stage 3: The Aftermath

The day you hear the words of your cancer is gone is the best day you will ever have in your life. I remember the date it was November 8, 2004. After nearly three years it was gone. For many this day never comes. For the Bono family this day never came. Watching your child die, is something no parent should ever half to do.

Sadly even when the cancer is gone the damage is done. At least 2/3 of childhood cancer survivors suffer from long term side-affects. A long term side-affect is a side-effect of the treatment or the cancer itself. These side-effects can show up months to years after treatment ends. Some of the more immediate affects are: a loss of a limb/limbs, paralyze from the waist down to being completely paralyzed. Loss of mental stability, just to name a few. The others on the other hand the ones that take years to appear can be the worst ones.

Because 30 years ago children weren’t living past five years no one knew that these things could happen. Now that these kids are living longer many into their teen years they have become more and more prevalent. Some of these include: secondary cancers, infertility, growth problems, tooth decay, emotional issues, learning and memory problems, heart problems, lung, digestive. These issues can be deadly. And most likely will be deadly.

You see as mentioned earlier breast cancer gets the majority of the money, the majority of the fundraising. All year its breast cancer this, breast cancer that! I mean come on! September is CC month that is our month! Instead they take over. So I took a look at the survival rates for breast cancer and CC. Breast cancer has a ten year survival rate of 83%, a 15 year survival rate of 78% and a five year survival rate of 99%. CC has had an increase in five year survival rates over the last 40 years from 10%-nearly 90%, but for many CC’s the survival rate is much less. You see CC is made up of 12 different types of cancers and over 100 different sub-types. Breast is one type with only hand full of sub types. Also 35% of children diagnosed with CC will die within 30 years. About 17% within the 5 year survival rate will die. Those that survive the 5 year 18% will within 30 years. They also have an 8x greater mortality rate due to increased heart and liver disease and secondary cancers. In reality that’s less than a 55% overall survival rate. So tell me why we don’t have the funding and support we need?

Watching your child die, is something no parent should ever half to do. What makes it worse is all these parents can do is pray and hope that these treatments work. Here are some ways you can show your support: Daisy Day’s, Relay for Life, RMH. You see it’s not just prayer and money we want. We want to know that were not forgotten about, that there are other that care about us that want to help us. They are kids. They have no idea what’s happening all they know is that their lives are being destroyed and ripped away from them. These kids grow up faster than they should have to. They suffer so much.

I talk about my cancer, I’ve shared my testimony with you all, but there are things you don’t know. Nicole is probably the only one to know everything. After my cancer was gone I was almost immediately diagnosed with PTSD. It’s grown easier to talk about, but bear with me. I can say things casually about my cancer. But I can’t see another child with cancer. I mean I can look at a photo, but not a video and certainly not in person. When I go to CHOP I see these kids but I can’t look at them. When I meet Brianna, I balled my eyes out. I may not remember it, but it’s as if I do. When Bro Jo showed that video in class my first though was I don’t think I can watch this but I made myself. I cried throughout that entire hour. And when it was over and Nicole asked if I was ok I broke. You all saw me I know you did. I tell myself that I don’t avoid hospitals and I don’t. But I can become a hypochondriac faster than you can blink. At least two months before my CHOP appointment my mom notices my anxiety levels rise. I avoid eye contact when discussing my cancer I hate therapists. I still get night terrors. They went away for a while but last year they came back I’ve told you about those they’re not as bad as the ones I used to get. Those it took me a while to get back to reality. I’m telling you this because I’m not the only survivor with this I am fighting constantly. So are they.

In this presentation today I have taken you through only some of what a child fight cancer faces. I have shown you the diagnoses, the treatment, and how their future will be affected because of the cancer. How devastating the lack of funding and support really is. Walking away today I just ask you one simple question: If you don’t give them a voice, who will? You can no longer say “I didn’t know.”

It's long I know, but...we may survive, but that's the funny thing about surviving, your not living. They're two separate things. I told myself I would try to keep what I tell people on this cite limited, but if it helps than it's worth it. I was four years old. I've never been a normal kid. Every year I walk into the doctors and wait with baited breath for them to tell me it's back or that a side-effect has appeared. The fight never ends.

Cancer doesn't care if your black or white, American or Asian, gay or trans. It doesn't care. My last visit to the hospital I walked into the room to have my blood drawn and there was this little boy no more than five screaming saying this: "I don't want to anymore. No more blood draws, tell the doctor I don't want to anymore. Five years old. Right after that I had to go have my heart checked and the tech tells me she had a boy in here maybe four with his sister and he pointed at the ultrasound and said that's my sissy's heart. He could read the machine. It doesn't just effect those with cancer but everyone around them. No kid should know these things.

So thank you for doing this, for supporting these kids, for giving them a voice.

#GoGold #betheirvoice #christophershaven

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lauramalchowblog · 5 years ago

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Top 10 | Patient Leader Hero

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Patient Leader Hero Award

These are a particularly special group of Patient Leaders. Their dedication is igniting change and their impact is indisputable. They embody the spirit of a healthcare influencer and continue to go above and beyond for their communities. These Patient Leaders are truly the heroes of the online health community.

Asa Maass | Autism Patient Leader

2019 Patient Leader Hero Winner

“I’m a dad, husband, video creator, and autism advocate. I started my YouTube channel FatheringAutism almost 3 years ago. My intention was to spread awareness and acceptance while making the world a softer place to land for my nonverbal autistic daughter Abbie. Looking around the internet I found so many amazing mothers advocating for their children but not many dads sharing their story. I decided to make it a point to break the stigma that parenting responsibilities in a special needs family falls mainly on the mom. It didn’t take long to realize the videos we made as a family really helped others.”

Follow this inspiring WEGO Health Awards winner today.

Priscilla Maass | Autism Patient Leader

2019 Patient Leader Hero Finalist

“What started with a small YouTube channel has grown into a social media presence that helps hundreds of thousands of people around the world. I am personally able to form bonds with fellow autism moms and give experience and advice on navigating through things like puberty, meltdowns, bad days, and good ones. I stress the importance of not allowing a bad moment to define your day or a diagnosis to define your life. I help other moms to realize the importance of taking time for themselves and how that makes you a better caregiver.”

Click here if you want to add Priscilla’s positive voice to your feeds.

Kristal Kent | Fibromyalgia Patient Leader

2019 Patient Leader Hero Finalist

“If through my advocacy efforts, I can make 1 person with Fibromyalgia feel less alone and validated, then it gives my pain purpose!”

Learn more about Krista and follow her on social.

Cassidy Megan | Epilepsy Patient Leader

2019 Patient Leader Hero Finalist

Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy’s goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. The Epilepsy Association of Nova Scotia came on board in 2008 to help develop Cassidy’s idea which is now known as the Purple Day for epilepsy campaign.

Follow Cassidy on social and let her advocacy educate and inspire you.

Lara Bloom | Ehlers-Danlos Syndrome Patient Leader

2019 Patient Leader Hero Finalist

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders.

Want to learn more about Lara’s advocacy? Click here.

Kristin Anthony | Cancer Patient Leader

“I entered the healthcare world when I was diagnosed with Thyroid Cancer in 2009. At that time, I was also experiencing breast health issues and my Mom had been diagnosed with her first breast cancer. I felt that something was not right, and started to research and ask questions though I was cautioned against doing that. I happened upon a rare genetic syndrome called Cowden Syndrome which results from a mutation of the PTEN Gene. I met many of the criteria and still had difficulty getting someone to listen. As it turns out, I was right and I do have a PTEN mutation. When I was diagnosed in 2011, there was little to no information or support available. I chose to change that and our foundation was born. Today, we have grown five fold plus since inception and awareness has improved greatly.”

Stay updated as Kristin continues to make a difference by following her.

Melissa Adams VanHouten | Gastroparesis Patient Leader

“After being diagnosed with gastroparesis in February of 2014, I became a passionate advocate for those in my community who feel voiceless and ignored. Currently, as the Association of Gastrointestinal Motility Disorders (AGMD) Patient Education and Advocacy Specialist, co-author of the book, “Real Life Diaries: Living with Gastroparesis,” and creator and administrator of several online patient support and advocacy groups, including “Gastroparesis: Fighting for Change,” I spend my days advancing the cause of those who struggle with the sometimes devastating and life-altering effects of gastroparesis and other chronic illnesses. It is my fondest desire to empower others to advocate for awareness, better treatments, and, ultimately, cures.”

Melissa is fired up about advocacy. Follow her on social.

Caleigh Haber-Takayama | Cystic Fibrosis Patient Leader

“Experiencing the struggles of end-stage lung disease and fighting to breathe every day gave me a new perspective on what is most meaningful in life.” Through Fight2Breathe, she aspires to increase awareness on chronic illness, genetic disease, and organ transplantation, identify and support innovative research, and amplify and focus the community to support those in the fight.

Add Caleigh to your feeds.

Rafaela Estrougo | Epilepsy Patient Leader

“Hi! I’m Rafaela, from Brazil living in LA. Was diagnosed with epilepsy when I was 1 year old. Discovered my path is to help and support, but specially spread the word out there. Join the epilepsy community and raise awareness to end stigma.”

Check out the important advocacy work Rafaela is doing.

April Stearns | Breast Cancer Patient Leader

“Four years after my diagnosis, I launched WILDFIRE Magazine as a way to create community through personal storytelling as it pertains to young women diagnosed with breast cancer. I had no magazine publishing experience but as a writer and editor, I felt called to create a roadmap of sorts, a beautiful resource for others that also served as a break from the noise of the Internet and the medical pamphlets on breast cancer. I felt a strong need to help others heal through the reading and writing of stories.”

Learn more about April and WILDFIRE and follow on social.

Want to be a hero to your community? Following these Patient Leader superstars will give you the inspiration you need.

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jesseneufeld · 5 years ago

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Top 10 | Patient Leader Hero

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

WEGO Health Awards Patient Leader Hero Award

Asa Maass | Autism Patient Leader

2019 Patient Leader Hero Winner

Follow this inspiring WEGO Health Awards winner today.

Priscilla Maass | Autism Patient Leader

2019 Patient Leader Hero Finalist

Click here if you want to add Priscilla’s positive voice to your feeds.

Kristal Kent | Fibromyalgia Patient Leader

2019 Patient Leader Hero Finalist

“If through my advocacy efforts, I can make 1 person with Fibromyalgia feel less alone and validated, then it gives my pain purpose!”

Learn more about Krista and follow her on social.

Cassidy Megan | Epilepsy Patient Leader

2019 Patient Leader Hero Finalist

Follow Cassidy on social and let her advocacy educate and inspire you.

Lara Bloom | Ehlers-Danlos Syndrome Patient Leader

2019 Patient Leader Hero Finalist

Want to learn more about Lara’s advocacy? Click here.

Kristin Anthony | Cancer Patient Leader

Stay updated as Kristin continues to make a difference by following her.

Melissa Adams VanHouten | Gastroparesis Patient Leader

Melissa is fired up about advocacy. Follow her on social.

Caleigh Haber-Takayama | Cystic Fibrosis Patient Leader

Add Caleigh to your feeds.

Rafaela Estrougo | Epilepsy Patient Leader

Check out the important advocacy work Rafaela is doing.

April Stearns | Breast Cancer Patient Leader

Learn more about April and WILDFIRE and follow on social.

Want to be a hero to your community? Following these Patient Leader superstars will give you the inspiration you need.

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edsenger · 5 years ago

Text

Top 10 | Patient Leader Hero

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

WEGO Health Awards Patient Leader Hero Award

Asa Maass | Autism Patient Leader

2019 Patient Leader Hero Winner

Follow this inspiring WEGO Health Awards winner today.

Priscilla Maass | Autism Patient Leader

2019 Patient Leader Hero Finalist

Click here if you want to add Priscilla’s positive voice to your feeds.

Kristal Kent | Fibromyalgia Patient Leader

2019 Patient Leader Hero Finalist

“If through my advocacy efforts, I can make 1 person with Fibromyalgia feel less alone and validated, then it gives my pain purpose!”

Learn more about Krista and follow her on social.

Cassidy Megan | Epilepsy Patient Leader

2019 Patient Leader Hero Finalist

Follow Cassidy on social and let her advocacy educate and inspire you.

Lara Bloom | Ehlers-Danlos Syndrome Patient Leader

2019 Patient Leader Hero Finalist

Want to learn more about Lara’s advocacy? Click here.

Kristin Anthony | Cancer Patient Leader

Stay updated as Kristin continues to make a difference by following her.

Melissa Adams VanHouten | Gastroparesis Patient Leader

Melissa is fired up about advocacy. Follow her on social.

Caleigh Haber-Takayama | Cystic Fibrosis Patient Leader

Add Caleigh to your feeds.

Rafaela Estrougo | Epilepsy Patient Leader

Check out the important advocacy work Rafaela is doing.

April Stearns | Breast Cancer Patient Leader

Learn more about April and WILDFIRE and follow on social.

Want to be a hero to your community? Following these Patient Leader superstars will give you the inspiration you need.

The post Top 10 | Patient Leader Hero appeared first on WEGO Health.

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conners-clinic · 6 years ago

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Increased Interest in Alternative Cancer Treatments

In recent years, we’ve seen an increase in the amount of interest the general public has shown in alternative cancer treatment therapies, whether instead of or along with (integrative) conventional medicine cancer solutions. This could be due to several factors, not the least of which include:

dissatisfaction with chemotherapy side effects

cost of chemotherapy, radiation, and surgery (especially with quality, affordable insurance options diminishing)

growing interest in natural, holistic living

increased concern with Big Pharma (you don’t have to be a conspiracy theorist to be concerned here)

disgust with fraud exposés related clinical trials for drugs

Jump to the Top 5 List of Alternative Cancer Treatments

It has been said that over 30% of Americans seek out alternative treatment to cancer over modern, allopathic (conventional) methods.

Conventional Medical Cancer Treatments

Typical cancer treatments that oncologists recommend include chemotherapy, radiation, surgery, and/or pharmaceutical drugs. However with the popularity of these choices diminishing, many patients are looking for safer, more natural ways to treat their cancer.

Understanding of the Various Causes of Cancer

As we learn more about the complexity of the human body, and all the possible variables involved in sickness and disease, we realize there is a lot more at play in a cancer diagnosis. Not only are there internal/biological factors at play (genetics, gut health/diet, bioenergetics, detoxification, etc.), but we need to also take into consideration environmental stressors (chemicals/toxification), emotional/psychological problems, and spiritual consciousness. This is how we take a truly holistic perspective on healing; looking at the whole persons (body & spirit/soul.)

You will rarely find physicians in the medical world that consider all these areas, however as mentioned above there is a growing understanding of the natural/holistic model. I recount the story often when speaking about my time studying for my AMA fellowship Integrative Cancer Therapy with the medical-oriented training organization A4M (American Academy of Anti-aging Medicine), that I was the only alternative, natural clinician attending the very first training (everyone else were MD’s.) While each one admitted that there was no way they could put into practice what they were learning or they would get kicked out of their group, they were excited to learn this information for their own families use. The point is, there are more and more medical doctors that are becoming unhappy with their (forced) only options to offer their cancer patients, and are seeking out alternative cancer treatment solutions to complement the medical model.

The 5 Most Popular Alternative Cancer Treatments

As we discuss the 5 most popular alternative cancer treatments for patients with cancer, it’s vital to understand that we don’t treat cancer. Our job as holistic health practitioners is to help you get your body back to a healthy state (through diet/nutrition, therapies, emotional/spiritual support) so that you can fight off disease (like cancer.) So when we say things like, “the most popular alternative cancer treatments,” we’re referring to therapies and protocols used to help support your body’s natural ability to heal. Also, keep in mind that there are dozens of other alternative cancer treatments that we didn’t mention. This does not mean they are not as effective; in fact some may be better than those on this list. We are only narrowing the focus to the most popular options available.

More importantly, every person’s body is different. What works for one person may have minimal effects on another. This is the primary reason we require genetic testing, among other labs and tests, on all patients in our clinic. As was just mentioned, every individual body is unique. Cancer patients have distinct genes that we want to review. There are cancer suppressor genes that, if defective, we want to support; there are genes that hint at what a person’s cancer may be “feeding on” thereby helping us govern one’s diet.

Each person has a set of genes – about 20,000 in all. The differences between people come from slight variations in these genes. For example, a person with defects (variants) on their genetic detoxification pathways may have a greater difficulty ridding their body of pesticides, giving them an increase risk of health issues.

1. Gerson Therapy (Juicing and Coffee Enemas)

The Gerson Therapy (perhaps the most well-known alternative cancer treatment protocol in the world) is a natural treatment that triggers the body’s amazing ability to heal itself with of a protocol of organic, plant-based diet, raw juices, coffee enemas, and natural supplements. Dr Gerson used intense detoxification to eliminate wastes, regenerate the liver, reactivate the immune system, and restore the body’s essential defenses: enzyme, mineral, and hormone systems.

Dr Max Gerson succeeded where many pharmaceutical companies fail because he spent decades trying to improve his clinical work, and he watched his patients closely to see what worked.

At Conners Clinic, we have created a Modified Gerson Therapy which is a very practical, highly detailed guide to the intensive nutritional treatment of cancer and other life-threatening diseases that many would like you to believe is impossible to obtain. Thanks to the work of Max Gerson, M.D., and his daughter, author Charlotte Gerson, much of this knowledge is readily available for all who need it.

Learn more about the Gerson Therapy

2. Rife Frequency Therapy (Royal Raymond Rife)

Royal Raymond Rife was a brilliant scientist born in 1888 and died in 1971. After studying at Johns Hopkins, Rife developed technology which is still commonly used today in the fields of optics, electronics, radiochemistry, biochemistry, ballistics, and aviation. It is a fair statement that Rife practically developed bioelectric medicine himself. He received 14 major awards and honors and was given an honorary Doctorate by the University of Heidelberg for his work.

Rife painstakingly identified the individual spectroscopic signature of each microbe he observed, using a slit spectroscope attachment. He slowly rotated block quartz prisms to focus light of a single wavelength upon the microorganism he was examining. This wavelength was selected because it resonated with the spectroscopic signature frequency of the microbe based on the now-established fact that every molecule oscillates at its own distinct frequency.

He later found a frequency of electromagnetic energy that would cause the cancer virus to diminish completely when entered into the energy field. The great discovery led Rife to create a device that could be tuned to output the frequency that would destruct the cancer. He used the same principle to kill them, which made them visible: resonance. By increasing the intensity of a frequency which resonated naturally with these microbes, Rife increased their natural oscillations until they distorted and disintegrated from structural stresses. Rife called this frequency the mortal oscillatory rate, or MOR, and it did no harm whatsoever to the surrounding tissues.

Learn more about Rife Frequency and Cancer

3. The Budwig Protocol (Flax Seed Oil and Cottage Cheese)

The Budwig Protocol Diet uses Flaxseed oil and cottage cheese as the mainstay of this dietary approach to treating cancer. Developed by the brilliant German biochemist, Dr. Johanna Budwig, it has been used very successfully by thousands of cancer patients. Dr. Budwig was one of Germany’s top biochemists as well one of the best cancer researchers throughout all of Europe. She was born in 1908 and seven times she was nominated for the Nobel Prize.

Dr. Budwig claimed to have had over a 90% success rate with her diet and protocol with all kinds of cancer patients over a 50 year period. This approach is based on the fact that flaxseed oil is one of the highest sources of omega-3 and omega-6 fatty acids and cottage cheese is one of the highest sources of sulfur-based proteins. Taken together, the fatty acids bind to the sulfur-based proteins, which results in optimum transport of the fatty acids to cancer cells.

The underlying concept is that the omega-3 and omega-6 fatty acids repair the damaged cell walls and chemical communication of the cancer cells to the point where they normalize. Dietary restrictions and extra supplementation is also recommended. People with many different types of cancer have responded well to this method, but prostate cancer appears to show a particularly good response.

Learn more about the Budwig Protocol Diet and Cancer

4. Enzyme Therapy (Dr Kelley and Dr. Nicholas Gonzalez)

Dr. Kelley made most of his discoveries when he cured himself of metastatic pancreatic cancer after he was given two months to live. He studied Dr. Beard’s work (published in the early 1900’s) and discovered the benefits of high dose enzyme therapy. The wonderful thing about this type of therapy is that, not only does it work but also it has neither side affects nor contraindications. Two physicians in New York (who have been some of my teachers in the Integrative Cancer Therapy Fellowship program), Dr. Gonzalez and Dr. Isaacs, worked together to care for patients with this alternative cancer treatment and had great results. The treatment centers around taking high doses of special enzymes that could once only be gotten from these physicians – we now have full access to this approach!

Though I do not advocate all of Dr. Gonzalez’s work, the enzyme portion of his therapy derived from Dr. Kelley’s work is one that we readily incorporate, involving strict diet based on Sympathetic or Parasympathetic dominance, high-dose enzymes, and regular coffee enemas. While we do not adhere to Dr. González’ mega-vitamin approach, we do believe enzyme therapy has proven itself clinically.

Read more about PEMF and Cancer

via News – – Conners Clinic

#IFTTT #News – – Conners Clinic

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outfittrends · 6 years ago

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Cute Dwarf Couples -18 Romantic Short Couples You Will Fall in Love With Outfit Trends - Ideas How to Wear

New Post has been published on https://www.outfittrends.com/cute-dwarf-couples-romantic/

Cute Dwarf Couples -18 Romantic Short Couples You Will Fall in Love With

Cute Dwarf Couples: Ever heard of the saying, “Good things come in small packages”? Well, we are here to tell you why it is true. Meet these Dwarf Couples that are here to melt your hearts. They may be ‘Little People’ to the world but to each other, they are their everything. Sticking together like every normal couple, these dwarfs fight all odds to make their relationship work.

The fact that a short height does not bother these people makes us realize how thankless we are to not count our blessings. Moreover, it is a lesson for people that there is no need to look for love elsewhere when there is so much love within.

Romantic Short Couples

Before we talk about these adorable people, here is something we would like you to know.

Being overweight, underweight, short or tall is something that is beyond one’s control.

Try to accept yourself the way you are.

Respect people and love them for who they are instead of trying to be the way you want them to be.

Loving your ownself transforms your aura and the way people perceive you.

Stop finding flaws within yourself or others and let loose.

↓ 18. Peter Dinklage and Erica Schmidt

Peter Dinklage, who plays Tyrion Lannister in Game of Thrones, is one of Hollywood’s most famous Dwarfs. The actor suffers from achondroplasia, a common cause of dwarfism. He married a Theatre Director named Erica Schmidt in 2005. Schmidt happens to be 5 Ft and 6 inches tall yet accepts her, 4 Ft 4 inches, tall husband with love. The couple has two babies but are extremely private and do not disclose much about them. The actor has won a Golden Globe and is often spotted with his wife at Public Events.

Via

↓ 17. Warwick Davis and Samantha Davis

With a history of a rare genetic disease, Warwick entered the Entertainment Industry and made it his home. The Harry Potter fame star and his lovely wife have been married since 1991. Daughter of Warwick’s Business Partner, he met Samantha while filming Willow, where she had a small role. Like Warwick, Samantha is also a dwarf as she suffers from achondroplasia. After losing 2 sons and an additional 2 miscarriages, the couple was able to welcome their two little ones, Annabelle and Harrison.

Via

↓ 16. Danny Woodburn and Amy Buchwald

Danny Woodburn, who is better known as Mickey Abbott of Sienfield, is a Hollywood Actor, Comedian, and an Activist. Woodburn is married to Amy Buchwald, trained in theatre arts. The talented couple is also known to have created a menopausal superhero. The couple is known to stand for what they believe in and do not shy away from talking about topics that are considered taboo. Buchwald is an individual of a fairly normal height, unlike Woodburn who is a dwarf, yet the two have been in love since 1998.

Via

↓ 15. Tony Cox and Otelia Cox

The story of Tony Cox and Otelia Cox is no less than a fairytale. The couple started the cliched way by being high school lovers and Otelia also got to be Tony’s prom date. He then proposed to her after graduating and got married in 1981. They have since been together and have a child of their own. Despite having a public life, they have managed to keep the name and gender of their child under the wraps. The couple also does not make public appearances together, keeping their love life private.

Via

↓ 14. Brad William and Jasmine Gong

The most common cause of Dwarfism seems to be Achondroplasia, a disease that Brad Williams was also born with. The disease reflects greatly in his form of work. His career began with a Live Comedy Show featuring Carlos Mencia which he attended as an audience. Impressed with his humor, Mencia chose William for the show’s opening acts that he has done ever since. Brad and Jasmine tied the knot in September, last year. The couple has been successful in keeping their love life private and it is not known how the two met.

Via

↓ 13. Jerry Maren and Elizabeth Barrington

The famous Hollywood actor, Jerry Maren played Munchkin in the 1939 film, The Wizard of Oz. At the age of 18, Maren was 3 Feet and 6 Inches tall. He later got a hormone treatment that allowed him to grow to Four Feet and Six Inches. Jerry was married to Elizabeth from 1975 till 2011, the year she breathed her last. Elizabeth is known to have always been by her husband’s side and loved listening to his stories. Interestingly, the two had initially met at the Little People of America Meeting. Before her marriage, she had been a data processor and switched fields post marriage. She worked as an actress but garnered most appreciation as a stunt double. Jerry Maren died 7 years after the death of Elizabeth.

Via

↓ 12. Nathan Philips and Laura Whitfield

The story of Nathan and Laura is a fairytale in its true essence. The two met while playing dwarfs for a Snow White theatre play. After their engagement in 2013, they welcomed their little baby boy, Nathan Jr, in 2014. The baby is also known as a miracle child as he suffers from two forms of Dwarfism. The parents had been warned by the doctor about his low chances of survival. Yet when Nathan and Laura recently tied the knot, Nathan Jr. was the ring bearer. With the cushion a tad bit heavy for him, he threw it away and still managed to be the center of everyone’s attention.

Via

↓ 11. Joe Stramondo and Leah

Joe and Leah are the perfect definitions of strength. Leah, 37, has a Masters in Public Policy, while Joe, 36, has a Ph.D. in Philosophy. Both of them suffer from different forms of Dwarfism but do not let that define them. The birth of their little daughter, Hazel, brought with it a surprise that she was average-sized, unlike her parents. After Hazel came Silas, their baby boy, who is also average-sized. The couple strongly advocates the rights of the disabled and do not shy from using the term dwarfism. Joe’s sense of humor and wit and Leah’s lively nature make for a perfect combination. The couple documented their struggle to conceive and their day to day adventures in the movie Far From The Tree.

Via

↓ 10. Cullen and Charli Adams

The Instagram-Famous couple Cullen and Charli are happily married with two kids. The two suffer from different kinds of Dwarfism, with Charli being a sufferer of achondroplasia and Cullen of geleophysic dysplasia. Cullen has had the life-changing opportunity of working with Chris Hemsworth, while Charli uses Instagram as a platform to share daily life updates of her family. The much in love couple go about their lives like any ordinary couple and live life to the fullest. Both their babies suffer from a similar kind of dwarfism and the Adam Family remains steadfast in bringing up their children desensitized to it, ensuring normal lives for them.

Via

↓ 9. Karina Lamos and Beau

Brazilian Actor-Model, Karina Lamos is known as World’s sexiest dwarf who has set social media on fire with her good looks. The 4 Feet, 3 Inches tall beauty has 170,000 Followers on her Instagram. The actress is full of confidence about herself and loves staying in shape. She has often been spotted with her lover on Instagram where she does not shy away from indulging in some PDA. Karina’s partner seems to be slightly taller than her and we love how adorable they look together.

Via

↓ 8. Bill Klein and Dr. Jennifer Arnold

Bill Klein happens to be a businessman, while Jennifer is a Neo-natalist. The couple got together for a television series ‘The Little Couple’ that aired on TMZ. Both of them suffer from skeletal dysplasia which leaves Bill at a height of 4 feet, while Dr. Jennifer is about 3 Feet and 2 Inches tall. The couple has endured extremely tough times together. Starting with their struggles with conceiving which eventually lead to the adoption of two lovely children, Will from China and Zoey from India, both of who are dwarfs. Jennifer then revealed suffering from a rare form of cancer that was a result of a Non-Viable Cancer. Jennifer loves to document her life and parenting struggles on her Instagram page.

Via

↓ 7. Paulo Gabriel da Silva Barros and Katyucia Lie Hoshino

Here’s a very interesting story where Paulo and Katyucia met over social media. The two hold Guinness World Record for being the shortest married couple. Paulo serves as a legal secretary while Katyucia is a beautician. The couple marked their union with a cake, wedding attire and a fun photo-shoot. The couple was also presented with a certificate amidst the celebrations. The lovely couple has been together for over 8-years now.

Via

↓ 6. James Lusted and Chloe

James, 3 Feet 4 Inches tall used a specially made ladder to say his vows to his 5 Feet 7 Inches tall Bride. The couple got engaged in 2014 and married 2 years later. James was born with Diastrophic Dysplasia as his parents carried the rare gene. However, this did not bother his loving wife who married him without any uneasiness. The couple once met over lunch where James was presented with Crayons as he was mistaken for a child.

Via

↓ 5. Steve Redford and Jenna Howard

Average sized Jenna Howard found her love in a 4 Feet 3 Inch tall Steve. Jenna does not mind the size difference and considers Steve to be just as handsome as Brad Pitt. The couple has a set of 3-Year-old twins where the little girl suffers from a form of dwarfism while the little boy is growing at an average rate. The couple met through a friend and 4 months in, she got pregnant, after which there was no looking back.

Via

↓ 4. Arthur and Penny Dean

The President of Dwarfs Sports Association UK, Arthur, and Chair, Penny, were awarded an OBE each in June 2014 by the Queen. Arthur and Penny, who are grandparents to two, are dedicated to working for the Dwarf Community. What is more romantic than being steadfast and hardworking towards a common cause that is relatable to both? Arthur and Penny share the same form of dwarfism and struggled with conceiving children of their own. The couple adopted a baby boy after which they were able to conceive a baby boy who, sadly, could not survive. The couple later adopted another child with dwarfism. Penny has since spoken up on dwarfism, spreading awareness in the field of medicine.

Via

↓ 3. Li Zhouyao and Hai Lulu

The lovely couple from China is just like any ordinary couple. They belong to Luoyang, Henan province of China and sweetly pose for their wedding pictures. We love how happy they look together.

Via

↓ 2. Steve and Gillian Martin

Gillian is a primary school teacher from Lancashire and suffers from achondroplasia. Gillian along with husband Steve, who, by the way, is of average height, starred in an ITV Documentary titled My Dwarf Family. Gillian and Steve are parents to Sophie, who is also a sufferer of dwarfism. Through My Dwarf Family, she documents how her life is nothing different from ours. She also disapproves comedy targetted towards individuals of short height and wants people to treat dwarfs as grown-up people and not children. The only actor she approves of is Peter Dinklage. We find it sweet how Gillian’s height never seemed to be a problem for Steve who loves her for she is.

Via

↓ 1. Nicole and Mike Massetts

One of the most heartwarming couples – Nicole and Mike, the two met at a mutual friend’s wedding. Nicole is a woman of average height, while Mike suffers from Achondroplasia. 27 weeks into her pregnancy, Nichole found out her son also had Achondroplasia like his dad. Right after the birth of their son Vincent, he had to be taken to the NICU after minor complications but it all turned out well. Nicole even blogged to talk about her pregnancy and her struggles of raising a son with Achondroplasia up until Vincent turned 10 months old.

Via

The greater message to take away here is how in love these beautiful people are with their partners regardless of height, weight, cast or creed. It is essential to love people as they are instead of who you would want them to be.

#couples fashion #wedding

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jakehglover · 7 years ago

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The New GMO Mandate — Government Modified Babies

By Dr. Mercola

As gene-editing technology becomes more advanced, the idea of “designer babies” being created in a lab for those who can afford them is no longer a plot relegated to Hollywood films. It’s becoming a backdrop to the 21st century, bringing with it tough questions about whether it’s ethical to tinker with a baby’s genes and, perhaps even more controversial, whether it’s immoral not to.

At the heart of this issue is CRISPR, or Clustered Regularly Interspaced Short Palindromic Repeat, a technology that allows scientists to go into your DNA and essentially cut and paste it at specified places. Progress is being made in tackling genetic diseases such as sickle-cell anemia and certain forms of blindness and muscular dystrophy, particularly with particularly with the invention of CRISPR-Cas9.1

Will Parents Become Mandated to Gene-Edit Their Babies?

By modifying an enzyme called Cas9, the gene-editing capabilities are significantly improved, in some cases reducing the error rate to "undetectable levels." While experts have previously said CRISPR and Cas9 should not be used on human babies, a report released in February 2017 by the National Academies of Sciences and Medicine stated DNA in germline cells, such as embryos, eggs and sperm, may be altered to eliminate genetic diseases.2

The stipulation was that the technology be used only to correct disease or disability, not enhance health or ability.3 Many, including retired bioethicist Ronald Green of Dartmouth College, support the use of gene-editing technology for the purpose of eliminating genetic diseases, but what about nondisease conditions like poor impulse control to increase a child’s opportunities in life?

Julian Savulescu, an ethicist at the University of Oxford, told Science News he believes parents would be morally obligated to use gene-editing technology to keep their children healthy.

“If CRISPR could … improve impulse control and give a child a greater range of opportunities, then I’d have to say we have the same moral obligation to use CRISPR as we do to provide education, to provide an adequate diet …”4 Still, there are many concerns with germline gene therapy, which allows inserted genes to be passed on to future generations.

Who will decide, for instance, what conditions are deemed abnormal or worthy of gene editing? Further, the technology can only be done via in vitro fertilization (IVF), putting it out of reach of many people financially and potentially expanding inequality gaps. On the other hand, some argue that countries with national health care could provide free coverage for gene editing, possibly helping to reduce inequalities.5

And where will the proverbial line be drawn? Will people one day choose to create babies with greater intellectual ability, improved physical fitness or a certain color of eyes or hair? Creating genetically enhanced people could also lessen people’s tolerance for those who are different.

Iceland Brags About ‘Eliminating’ Down Syndrome

In Iceland, Down syndrome births are becoming increasingly rare, with just one or two children born with the condition each year, a statistic that’s reported much as a triumph. It’s not, however, that the country has discovered a “cure” for the condition, but rather that they’ve succeeded in nearly eliminating this population of people from the country, a phenomenon some may describe as genocide.

In essence, Down syndrome is disappearing in Iceland, but not by nature or happenstance. In Iceland, up to 85 percent of pregnant women receive prenatal screening tests to detect chromosome abnormalities, including Down syndrome. Close to 100 percent of women who receive a positive result end up terminating their pregnancy, CBS News reported.6

Other countries also have high termination rates for fetuses with Down syndrome: 67 percent in the U.S., 77 percent in France and 98 percent in Denmark, for instance. “Heavy-handed genetic counseling” has been said to play a role in Iceland’s high elimination rate of Down syndrome pregnancies, with one counselor stating, "We don’t look at abortion as murder … We look at it as a thing that we ended. We ended a possible life that may have had huge complications."7

In the U.S., some states, including North Dakota, Ohio, Indiana and Louisiana, have passed laws prohibiting doctors from performing abortions for the sole reason of a Down syndrome diagnosis. Yet others maintain it’s a woman’s constitutional right to terminate her pregnancy.

“I’m going to be blunt here: That was not the child I wanted,” wrote one woman who says she would have chosen abortion had genetic testing revealed Down syndrome during her pregnancy. “That was not the choice I would have made. You can call me selfish, or worse, but I am in good company. The evidence is clear that most women confronted with the same unhappy alternative would make the same decision.”8

On the other hand, a study that asked people with Down syndrome about their self-perception stated “they share similar hopes and dreams as people without DS [Down syndrome]” and “overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives.”9 As the prevalence of not just genetic testing but also the ability to do something about the outcome increases, the questions of which diseases and conditions count as life-threatening or worthy of intervention will only continue to grow.

Synthetic Biology Is the ‘Holy Grail’ of Genetic Engineering

We are better learning how to engineer living systems, for better or worse. In what’s being described as the “holy grail” of genetic engineering, synthetic biology has been used to create a semi-synthetic organism that stores and retrieves increased genetic information. Researchers wrote in the journal Nature:10

“Since at least the last common ancestor of all life on Earth, genetic information has been stored in a four-letter alphabet that is propagated and retrieved by the formation of two base pairs. The central goal of synthetic biology is to create new life forms and functions, and the most general route to this goal is the creation of semi-synthetic organisms whose DNA harbors two additional letters that form a third, unnatural base pair.”

In 2014, researchers including Floyd Romesberg of the Scripps Research Institute, created the first semi-synthetic organism by recreating the genetic material for a strain of E. coli, although the microbe wasn’t stable. In the latest triumph, the researchers were able to create a semi-synthetic organism that not only was stable but could produce artificial proteins similarly to its “unmodified parents.”

The creation brings with it potentially limitless possibilities that semi-synthetic organisms could one day access a range of functions that are not attainable by natural organisms. “In the near term, he [Romesberg] said, scientists could harvest such proteins from synthetic cells and use them to assist with drug delivery, or to make protein therapeutics, like insulin, more effective.” He continued to The Washington Post:11

“But an even more distant — and more enticing — application involves not just the proteins, but the lab-made microbes that produce them: ‘What if you allow the bacteria to harbor this unnatural information retrieve the protein and use it for something interesting?’ Romesberg mused. ‘Could you develop organisms that have new properties’ — like the ability to siphon up oil spills or eat cancer cells? ‘Could we develop cells that can do things their natural counterparts can't?’”

Technology Will Proceed Despite Unanswered Ethical Questions

Gene-editing technology is moving so fast that innovations are occurring before their full implications are known or fully understood. In 2015, Chinese researchers used CRISPR/Cas9 to edit human embryos — a first.12 That same year in the U.S., the National Institutes of Health does not provide funding for studies on gene-editing technologies in human embryos, stating:13

“The concept of altering the human germline in embryos for clinical purposes has been debated over many years from many different perspectives, and has been viewed almost universally as a line that should not be crossed. Advances in technology have given us an elegant new way of carrying out genome editing, but the strong arguments against engaging in this activity remain.

These include the serious and unquantifiable safety issues, ethical issues presented by altering the germline in a way that affects the next generation without their consent, and a current lack of compelling medical applications justifying the use of CRISPR/Cas9 in embryos.”

Yet, the scientific consensus seems to be changing, such that a number of prominent scientists now agree that clinical trials of human germline editing should proceed, provided they are for purposes of treating series diseases or disabilities. Meanwhile, research has progressed, with researchers correcting a pathogenic gene mutation in human embryos 67 percent of the time in one study14 and, in another, using CRISPR/Cas9 to investigate gene function in the earliest stages of human development.15

A CRISPR clinical trial in people with cancer has also taken place in China, and the technology has been used to edit human embryos made from sperm from men carrying inherited disease mutations. The researchers successfully altered the DNA in a way that would eliminate or correct the genes causing the inherited disease.16 If the embryos were implanted into a womb and allowed to grow, the process would result in the first genetically modified children — and any engineered changes would be passed on to their own children.

So far no one has attempted to take the next step — creating pregnancies with genetically engineered embryos, but the early studies are paving the way for it to one day happen. “We can be certain that, within a few years, gene editing technology will become safe enough for doctors to correct a mutation for cystic fibrosis or Huntington's disease in a human embryo, and from that embryo produce a healthy child who won't have to worry about passing on a devastating disease to her children,” Pacific Standard reported.17

“But once we begin correcting genetic diseases with germline editing, there will be no technical barrier to using this technology for less medically urgent needs, as long as would-be parents of genetically enhanced children are willing to conceive by in vitro fertilization.

By that point, advances in the technology will have almost certainly outpaced any ethical debate over how to use it … Even if certain types of germline edits wind up banned in the U.S., they will certainly be available elsewhere in the world.”18

What Does the Future Hold?

As was the case with genetic engineering of food, the technology will continue to progress beyond the reaches of regulation and ethics. Even with barriers in place, the creation of a gene-edited person is likely to be attempted, some say “at any moment.”19 It’s both an exciting and frightening prospect, especially since the technology isn’t perfect and may accidently hit other parts of the genome.

One study searched for unintended mutations, based on a separate study that used CRISPR-Cas9 to restore sight in blind mice by correcting a genetic mutation. The researchers sequenced the entire genome of the CRISPR-edited mice to search for mutations. In addition to the intended genetic edit, they found more than 100 additional deletions and insertions along with more than 1,500 single-nucleotide mutations, with unknown consequences.20

Further, former director of national intelligence James Clapper listed genome editing on the list of “weapons of mass destruction and proliferation,”21 which goes to show what could happen if such technology is misused. While it stands to be a game-changer in the future of human health, in the big picture such gains do not come without potentially catastrophic risks.

from HealthyLife via Jake Glover on Inoreader https://articles.mercola.com/sites/articles/archive/2018/03/27/gmo-mandate-government-modified-babies.aspx

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cbdoilbenefits1 · 7 years ago

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The Health Benefits of a Simple Egg Sandwich

[ad_1]

This is the typical conversation most mornings and sometimes at weekends during snack time, between my wife and my 4 year old daughter.

"Mum, I'm hungry." "What would you like to eat?" "Egg sandwich."

She wants a fried egg, cooked in a small dab of virgin olive oil over moderate heat with a sprinkling of freshly ground pepper in a sandwich of freshly baked wholegrain homemade bread. I introduced her to eggs when she was a toddler. Eggs are easy to chew and should be part of a daily diet given to any child of one year old or older. I remember when my daughter as a toddler would eat the egg white first and then pop the whole yolk of a hard-boiled egg straight into her mouth. I still remember when I was a child and my mother used to give me a hard-boiled egg whenever I was hungry. What happened to the good old fashioned days when eggs were given as snacks?

Today, we live in an addiction-prone society. Of all the addictions out there, one of the most deadly is one that is most often overlooked: Junk food. We feed our kids junk food everyday without realising it. We are all guilty of doing this. It is easier to pull out a bag of crisps when a child is hungry rather than have them suffer pangs of hunger. This practice is acceptable for the rare occasions but the problem with our society is that we use this kind of junk food as a common everyday snack.

Did you also know that processed food is junk food? The first image that comes to mind for most people when they hear the term "processed food" is a wrapped burger and a sleeve of fries served over a counter at a fast food joint. But the truth is the very food you have in your cabinets is processed if it's boxed, bagged, canned or jarred, frozen or dehydrated and has a list of ingredients on the label. Processed foods have been altered from their natural state for "safety" and convenience reasons. Processed foods are more convenient, it's so much easier to bake a cake by opening up a box, pouring out a dry mix, and adding an egg and some oil than starting from scratch. Instead of making a dish with fresh ingredients, why not pick up a ready-made meal from the store? Isn't it easier to just pop it in the microwave for a couple of minutes? No pots and pans, no mess! But processed food are laced with colours, those are often inedible, carcinogenic and harmful to the body. Studies have found that food colouring can cause hyperactivity and lapses of concentration in children. Chocolates, colas, flavoured drinks and snack are full of artificial colouring. These are not the only additives in processed foods. Don't forget the refined salt, sugar, preservatives, flavour enhancers and other so called "beneficial supplements". Children are especially vulnerable to these unnatural ingredients. Poor diets can slow growth, decay new teeth, promote obesity and sow the seeds of infirmity and debilitating disease that ultimately lead to incurable disease and death or worse make life insufferable.

Did you know that approximately 80% of mothers, who is usually the main parent controlling their child's diet, considered that their child's diet was 'very good/good/healthy' hence overestimate the quality of their child's diet. This is extremely worrying, since mothers who do not perceive that their children follow an unhealthy diet will not make the appropriate amendments to improve their child's dietary habits. Do not be one of these mothers, feed our children correctly and this can only be done by reducing your introduction of processed junk food into their diets. If you think you are one of these mothers who have already done this, think again. Do you feed your child bread from the bakery? Do you give them bottled "freshly squeezed" juice? Do you give them fruit yogurts? Do you spread their toast or sandwich with commercial butter or margarine? Do you use canned tomatoes to make your sauces? Do you feed them frozen sweet corn or peas? Worst of all, do you give them apples that you have not washed? This line of questioning could go on but if you answered "yes" to most of these questions already, your child has an unhealthy diet! (If you want to know more about the foods described above and why they are considered unhealthy read our research in "Is Your Food Killing You?").

How can a simple egg sandwich contribute to a healthy diet? A fried egg sandwich for instance, consists only of bread, egg and possibly butter and the oil used for cooking the egg. The benefits of homemade bread are described in our article "Wholegrains and their benefits". The benefits of homemade butter are described in our blog. The egg is a nutrient-dense food, containing high quality protein and a wide range of essential vitamins, minerals and trace elements.

As a whole food, eggs are an inexpensive and low calorie source of nutrients such as folate, riboflavin, selenium, lecithin and vitamins B-12 and A. Eggs are also one of the few exogenous sources of vitamins K and D. Furthermore, whole eggs are a complete source of proteins as it contains all the essential amino acids needed by the human body. Although, eggs were found to have lower amino acid content compared with beef, the biological value of egg protein is greater. The protein source from eggs are good for the development of skeletal muscle and egg protein is widely used by athletes to increase muscle mass.

We all know the health benefits of omega-3 fatty acids especially eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA), associated with a reduced risk of cardiovascular disease (CVD) and mortality from heart diseases. Low levels of DHA have been associated with Alzheimer's disease. Chicken feed is now enriched with omega-3 to increase the omega-3 levels in their eggs. Consumption of DHA-enriched eggs can greatly enhance current dietary DHA intakes from non-fish sources and help approach or surpass recommended intakes for optimal human health.

Eggs had fallen in and out of favour through the years mainly due to the perception of cholesterol-rich eggs as a "forbidden food" developed in response to the highly publicized 1970s recommendation by the American Heart Association (AHA) to restrict egg consumption and limit dietary cholesterol intake to 300 mg/d. The dietary cholesterol guidelines are similar in the most recent AHA report;however, their position regarding egg intake has become more specific. It was stated the intake of one yolk a day is acceptable, if other cholesterol contributing foods were limited in the diet. Although an egg contains 212 milligrams of cholesterol, dietary cholesterol has less of an effect on blood cholesterol than once believed. Also, cholesterol is a dietary component that has elicited much public and scientific interest in conjunction with CHD but extensive research has failed to establish a definite link between dietary cholesterol intake and disease progression. In fact, a recent review of years of research has concluded that healthy adults can enjoy eggs without CVD. Many conclusions can be made about the ill-effects of eating eggs but these have to be taken with caution. For instance, one study concluded that eggs were linked to increased risk of Type 2 diabetes but this was not the real story as the result of manifestation of this disease was the associated bad nutrition, mainly sausages and bacon taken with eggs in the individuals tested. The reality of the situation is that although egg intake has steadily declined since the original recommendations in the 1970s, CHD and Type 2 diabetes as well as obesity are still the leading causes of death in the U.S. today.

Eggs have been getting some attention for their role in maintaining eye health and potentially helping prevent age related macular degeneration (AMD), the leading cause of irreversible blindness in the United States. This condition develops from long-term oxidative damage caused by the exposure of the eye to intense light. Recent research has shown the value of lutein, a natural pigment or carotenoid in egg yolks. Lutein and zeaxanthin accumulate in the macularregion of the retina therefore, because of their chemical properties; these two carotenoids may function to reduce the risk for development of AMD. Epidemiological studies support the fact that those individuals who consumed a greater number of foods rich in lutein and zeaxanthin had a lower risk for AMD. Even though eggs contain less lutein than leafy greens, the lutein in eggs is more easily absorbed. One yolk has been found to provide between 200 and 300 micrograms of these carotenoids. In a study that measured the total carotenoid content of several foods, lutein represented 15-47/100 parts of the total carotenoid found in various dark green leafy vegetables, whereas eggs were found to contain 54/100 parts. This suggests that one would benefit more by eating an egg than getting lutein from other sources. Lutein and zeaxanthin are also classed as antioxidants and their intake also may be associated with a decrease in the risk for rheumatoid arthritis, CHD and chronic diseases such as cancer.

Eggs contain many of the minerals that the human body requires for health. In particular eggs are rich in choline, an essential nutrient needed for the normal functioning of all cells. It is especially important for proper liver, brain and neural network, memory development and even in inflammation hence reducing risk of heart disease and breast cancer. The potential public health implications of not consuming enough of this essential nutrient have only recently begun to be examined. There is a significant variation in the dietary requirement for choline. When fed a choline-deficient diet, some men and women developed fatty liver and liver and muscle damage, whereas others did not. This brings in a genetic variability to the need of dietary choline. Nonetheless, it is strongly recommended not just for kids but also for moms-to-be as eggs are a concentrated source of choline without the added calories. To get the same amount of choline found in a single egg (125 mg/72 calories; most of the choline is in the egg yolk - 680 mg/100g), one would need to consume 3 ¼ cups of milk (270 calories) or 3 ½ ounces of wheat germ (366 calories).

Despite all their positive features, eggs sometimes are linked to food safety issues. They do need to be stored and handled properly. Eating raw eggs is not considered safe because eggs may contain salmonella, a type of bacteria that especially is dangerous for the very young, old and immune-compromised. In cases where raw egg is called for in a recipe, ensure that it is pasteurised.

If judged as a whole food, and not simply as a source of dietary cholesterol, the positive contribution of eggs to a healthy diet becomes apparent and far outweighs the myths about dietary cholesterol from eggs. Because eggs are a conventional food containing nutrients that play fundamental roles beyond basic nutrition, their promotion as a functional food should be considered. In conclusion, it is time is right to change the egg message. For the consumer,the most essential image is probably that eggs taste good. Taste is highly important to consumers. The second image needing change is that eggs be recognized as a nutritious food which also has health benefits beyond basic nutrition.The concept of eggs as a 'functional food' is new to many and requires a change in the perception of role of eggs in the diet. And finally, the evidence that eating eggs is unrelated to heart disease risk needs to be widely disseminated to health professionals and the public so that everyone can benefit from including eggs in the diet.

[ad_2] Source by Barrie McDowell

Originally Published Here: The Health Benefits of a Simple Egg Sandwich

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lauramalchowblog · 5 years ago

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Top 10 | Patient Leader Hero

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

WEGO Health Awards Patient Leader Hero Award

Asa Maass | Autism Patient Leader

2019 Patient Leader Hero Winner

Follow this inspiring WEGO Health Awards winner today.

Priscilla Maass | Autism Patient Leader

2019 Patient Leader Hero Finalist

Click here if you want to add Priscilla’s positive voice to your feeds.

Kristal Kent | Fibromyalgia Patient Leader

2019 Patient Leader Hero Finalist

“If through my advocacy efforts, I can make 1 person with Fibromyalgia feel less alone and validated, then it gives my pain purpose!”

Learn more about Krista and follow her on social.

Cassidy Megan | Epilepsy Patient Leader

2019 Patient Leader Hero Finalist

Follow Cassidy on social and let her advocacy educate and inspire you.

Lara Bloom | Ehlers-Danlos Syndrome Patient Leader

2019 Patient Leader Hero Finalist

Want to learn more about Lara’s advocacy? Click here.

Kristin Anthony | Cancer Patient Leader

Stay updated as Kristin continues to make a difference by following her.

Melissa Adams VanHouten | Gastroparesis Patient Leader

Melissa is fired up about advocacy. Follow her on social.

Caleigh Haber-Takayama | Cystic Fibrosis Patient Leader

Add Caleigh to your feeds.

Rafaela Estrougo | Epilepsy Patient Leader

Check out the important advocacy work Rafaela is doing.

April Stearns | Breast Cancer Patient Leader

Learn more about April and WILDFIRE and follow on social.

Want to be a hero to your community? Following these Patient Leader superstars will give you the inspiration you need.

The post Top 10 | Patient Leader Hero appeared first on WEGO Health.

Top 10 | Patient Leader Hero published first on https://venabeahan.tumblr.com

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jesseneufeld · 5 years ago

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Top 10 | Patient Leader Hero

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

WEGO Health Awards Patient Leader Hero Award

Asa Maass | Autism Patient Leader

2019 Patient Leader Hero Winner

Follow this inspiring WEGO Health Awards winner today.

Priscilla Maass | Autism Patient Leader

2019 Patient Leader Hero Finalist

Click here if you want to add Priscilla’s positive voice to your feeds.

Kristal Kent | Fibromyalgia Patient Leader

2019 Patient Leader Hero Finalist

“If through my advocacy efforts, I can make 1 person with Fibromyalgia feel less alone and validated, then it gives my pain purpose!”

Learn more about Krista and follow her on social.

Cassidy Megan | Epilepsy Patient Leader

2019 Patient Leader Hero Finalist

Follow Cassidy on social and let her advocacy educate and inspire you.

Lara Bloom | Ehlers-Danlos Syndrome Patient Leader

2019 Patient Leader Hero Finalist

Want to learn more about Lara’s advocacy? Click here.

Kristin Anthony | Cancer Patient Leader

Stay updated as Kristin continues to make a difference by following her.

Melissa Adams VanHouten | Gastroparesis Patient Leader

Melissa is fired up about advocacy. Follow her on social.

Caleigh Haber-Takayama | Cystic Fibrosis Patient Leader

Add Caleigh to your feeds.

Rafaela Estrougo | Epilepsy Patient Leader

Check out the important advocacy work Rafaela is doing.

April Stearns | Breast Cancer Patient Leader

Learn more about April and WILDFIRE and follow on social.

Want to be a hero to your community? Following these Patient Leader superstars will give you the inspiration you need.

The post Top 10 | Patient Leader Hero appeared first on WEGO Health.

Top 10 | Patient Leader Hero published first on https://drugaddictionsrehab.tumblr.com/

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zahrahpatelot · 7 years ago

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STILL ALICE

There is really no words to describe my emotions and feelings right now…as I immediately blog about my most inspirational movie which I have watched..STILL ALICE. When you cant remember your very own birthday, the name of your oldest child or how to even dress yourself…those are just some of the things which people with Alzheimers disease experience. Things that are so normal which no attention is even given to on a regular basis are the things which patients with Alzheimers fear of forgetting.

So what is Alzheimers many may question.. According to the usual Wikipedia definition it is, “A progressive mental deterioration that can occur in middle or old age, due to generalized degeneration of the brain. It is the commonest cause of premature senility”- seems as though its not a condition as big or hurtful as something like cancer, a heart disease or even a failing organ right?, which is why I feel the internal desire to share the story of STILL ALICE…

Still Alice directed by Richard Glatzer & Wash Westmoreland depicts the story of a women named Alice who was a smart, intelligent and successful women who was the professor of linguistics due to her fascination for language and communication. She lived a better than normal life having a good marriage, 3 kids and been a guest speaker at most internationally recognized universities and conferences. Until she experienced slight difficulty in remembering simple tasks like an appointment date and time, word, recipe or dinner plan which many of us forget on usual day to day basis due to our preoccupied lives, however over a short amount of time, this seemed to have worsened for Alice where she forgot automated responses such as her eldest daughters name, where she left her phone, if she met someone, the route to her home, how to dress herself and even where the toilet in her home was till the point where she messed herself due to the daunting task of repeatedly finding the bathroom. A women who once had memorized every speech she conducted had to now use a “yellow tool” to mark over a sentence to make sure she doesn’t repeat the same line over and over again as she couldn’t even remember the word highlighter.

Alice was diagnosed with a rare type of Alzheimers disease termed familial Alzheimers which meant that this could be genetically passed on to her children and even their children should they be carriers. A single person having to face her marriage fading away, forgetting who she used to be or all her achievements in her life as they would soon or later go to vain was still strong enough to believe in life and a cure. However the cure to this was not taking medication and pharmaceuticals like we all advise, insist and refer for, yet her cure was learning to live in the moment even if she does not remember that moment the very next day. People living with Alzheimers disease lose who they are or used to be, their personality or preferences however to most their greatest concern is forgetting the moments and memories of their life.

Alzheimers goes as a condition which is not greatly recognized and emphasized as other cognitive impairments as it is a condition which is very personal and individualistic. Stemming from Alzheimers attaches others such as depression, poor self esteem, lack of social skills/communication and loss of structure, however the major result is the inability to live life the way you plan or wish to or even worked towards. People with such a condition experience difficulty in society and people taking them seriously due to them no longer being able to be the person they once were. It makes them lose themselves so deeply as they often attempt to take their own lives away from themselves as they may forget that, that may be the one thing they hated or could not stand.

However as the title suggests STILL ALICE has made me realize that despite a person with Alzheimers forgetting who they actually are, it is up to those who know to help them find themselves and irregardless of who they may become, whether its childish, comic or silly they still are the same person as it is the disease that results in their unwilling change. As much as I’ve learnt about the deeper aspects of what people with Alzheimers go through.. way more then what we superficially assume, my take home message is one which a wise women once said: “ The life of a butterfly may be short yet never assume that their life was not beautifully lived”- ALICE. This has taught me that no matter how serious a condition may be, whilst one remains in this world, they deserve a life worth living

#OT week4

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thespearnews-blog · 8 years ago

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Get informed about cancer of the white blood cells (Leukemia) -Thespear Doctor

New Post has been published on https://thespearnews.com/2017/05/15/get-informed-cancer-white-blood-cells-leukemia-thespear-doctor/

Get informed about cancer of the white blood cells (Leukemia) -Thespear Doctor

Leukemia is a type of cancer that harms the body’s ability to make healthy blood cells. It starts in the bone marrow, the soft center of various bones. This is where new blood cells are made.

There are three main types of blood cells:

red blood cells carry oxygen from the lungs to the body’s tissues and take carbon dioxide to the lung

platelets help blood to clot

white blood cells fight infections, viruses, and diseases

Leukemia usually refers to cancer of the white blood cells. It tends to affect one of the two major types of white blood cells: lymphocytes and granulocytes. These cells circulate through the bloodstream and the lymph system to help the body fight off viruses, infections, and other invading organisms. Leukemia arising from cancerous lymphocytes is called lymphocytic leukemia; leukemia from cancerous granulocytes is called myeloid or myelogenous leukemia.

Leukemia is either acute (comes on suddenly) or chronic (lasts a long time). Acute leukemia affects adults and children. Chronic leukemia rarely affects children.

Leukemia can occur due to

genetic abnormalities exposure to radiation and chemicals such as benzene (found in unleaded gasoline) and other hydrocarbons exposure to agents used to cure or control other cancers, including radiation

Leukemia is usually not inherited. It tends to happen to people without any family history of the disease. Some forms of leukemia, though, such as chronic lymphocytic leukemia, strike close relatives in the same family. Acute leukemia

In people who develop acute leukemia, immature white blood cells multiply quickly in the bone marrow. Over time, they crowd out healthy cells. This can cause unexpected or excessive bleeding or infections. When the cancerous white blood cells reach high numbers, they can spread to other organs, causing damage. This is especially true in acute myeloid leukemia.

The two main types of acute leukemia involve different types of blood cells:

Acute lymphocytic leukemia is the most common type of leukemia in children. It mainly affects those under age 10, although adults sometimes develop it. Acute lymphocytic leukemia occurs when primitive blood-forming cells called lymphoblasts reproduce without developing into normal blood cells. These abnormal cells crowd out healthy blood cells. They can collect in the lymph nodes and cause swelling. Acute myeloid leukemia accounts for half of leukemia cases diagnosed in teenagers and in people in their 20s. It is the most common acute leukemia in adults. Acute myeloid leukemia occurs when primitive blood-forming cells called myeloblasts reproduce without developing into normal blood cells. Immature myeloblasts crowd the bone marrow and interfere with the production of normal blood cells. This leads to anemia, a condition in which a person does not have enough red blood cells. It can also lead to bleeding and bruising (due to a lack of blood platelets, which help the blood to clot) and frequent infections (due to a lack of protective white blood cells).

Both acute lymphocytic leukemia and acute myeloid leukemia have many subtypes. The treatment and prognosis may vary somewhat, depending on the subtype. Chronic leukemia

Chronic leukemia is when the body produces too many blood cells that are only partially developed. These cells often cannot function like mature blood cells. Chronic leukemia usually develops more slowly and is a less dramatic illness than acute leukemia. There are two main types of chronic leukemia:

Chronic lymphocytic leukemia is rare in people under age 30. It is more likely to develop as a person ages. Most cases occur in people between ages 60 and 70. In chronic lymphocytic leukemia, abnormal lymphocytes can’t fight infection as well as normal cells can. These cancerous cells live in the bone marrow, blood, spleen, and lymph nodes. They can cause swelling, which appears as swollen glands. People with chronic lymphocytic leukemia can live a long time, even without treatment. Most often, chronic lymphocytic leukemia is discovered when a person has a routine blood test that shows high levels of lymphocytes. Over time, this type of leukemia can require treatment, especially if the person has infections or develops a high white blood cell count. Chronic myeloid leukemia occurs most often in people between ages 25 and 60. In chronic myeloid leukemia, the abnormal cells are a type of blood cell called myeloid cells.

Both chronic lymphocytic leukemia and chronic myeloid leukemia have subtypes. They also share some characteristics with other forms of leukemia. The treatment and prognosis may vary depending on the subtype. Rarer forms of leukemia

Lymphatic and myelogenous leukemias are the most common. However, cancers of other types of bone marrow cells can develop. Megakaryocytic leukemia arises from megakaryocytes, cells that form platelets. (Platelets help blood to clot.) Another rare form of leukemia is erythroleukemia. It arises from cells that that form red blood cells. Like chronic and acute leukemias, rare forms of the disease can be categorized into subtypes. The subtype depends on what markers the cells carry on their surface. Symptoms

Early symptoms of leukemia include

fever fatigue aching bones or joints headaches skin rashes swollen glands (lymph nodes) unexplained weight loss bleeding or swollen gums an enlarged spleen or liver, or a feeling of abdominal fullness slow-healing cuts, nosebleeds, or frequent bruises

Leukemia can sometimes take a while to diagnose because many of its symptoms accompany the flu and other common medical problems. Diagnosis

Your doctor may not suspect leukemia based on your symptoms alone. However, during your physical examination, he or she may find that you have swollen lymph nodes or an enlarged liver or spleen. Routine blood tests, especially blood cell counts, may yield abnormal results.

At this point, your doctor may order other tests, including

blood tests to check for abnormal cells a bone marrow biopsy (a sample of bone marrow is removed and examined) tests for genetic abnormalities

Genetic tests can help determine exactly what type of leukemia you have. These sophisticated tests may also offer clues as to how you will respond to a particular therapy. Treating leukemia

The treatment of leukemia aims to wipe out the cancerous white blood cells. But this usually means killing healthy white blood cells and harming the body’s ability to fight infection. Acute leukemia

The treatment of acute leukemia does not depend on how far the disease has advanced but on the person’s condition. Has the person just been diagnosed with the disease? Or has the disease come back after remission (a period when the disease is controlled)?

For acute lymphocytic leukemia, treatment generally occurs in phases:

phase 1 uses chemotherapy in the hospital to try to control the disease. phase 2 continues chemotherapy, but on an outpatient basis, to keep the disease in remission. This means that person returns to the hospital for treatment, but does not stay overnight. phase 3 uses different chemotherapy drugs to prevent the leukemia from entering the brain and central nervous system. Chemotherapy may be combined with radiation therapy. phase 4 involves regular physical exams and laboratory tests after the leukemia has been treated to be sure that it has not returned.

If acute lymphocytic leukemia returns, different doses of various chemotherapy drugs are used to combat the disease. Several years of chemotherapy may be needed to keep the leukemia in remission. Some people may receive a bone marrow transplant.

With acute myeloid leukemia, treatment generally depends on the person’s age and overall health. It also depends on his or her blood cell counts. As with acute lymphocytic leukemia, treatment usually begins with induction therapy in an effort to send the leukemia into remission. When leukemia cells can no longer be seen, consolidation therapy begins. Bone marrow transplantation may also be considered in the treatment plan. Chronic leukemia

Treatment for chronic lymphocytic leukemia begins with determining the extent of the cancer. This is called staging. There are five stages of chronic lymphocytic leukemia:

stage 0: too many lymphocytes in the blood but no other symptoms stage I: lymph nodes are swollen because too many lymphocytes are being made stage II: lymph nodes, spleen, and liver are swollen because too many lymphocytes are being made stage III: anemia has developed because lymphocytes are crowding out red cells in the blood. stage IV: there are too few platelets in the blood. The lymph nodes, spleen, and liver may be swollen. Anemia may be present.

Treatment of chronic lymphocytic leukemia depends on the stage of the disease, as well as on the person’s age and overall health. In stage 0, treatment may not be needed, but the person’s health will be monitored closely. In stage I or II, observation (with close monitoring) or chemotherapy is the usual treatment. In Stage III or IV, intensive chemotherapy with one or more drugs is the standard treatment. Some people may need a bone marrow transplant.

For chronic myeloid leukemia, drugs known as tyrosine kinase inhibitors have become standard therapy, especially for people in the early stages of the disease. They correct the chemical defects in the cancer cells that had allowed them to grow in an uncontrollable fashion. The use of these targeted therapies has dramatically improved the prognosis for many people with chronic myeloid leukemia.

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viralhottopics · 8 years ago

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Just How Much Is a Medical Miracle Worth?

Sofia Priebe, 14, is slowly going blind. Her parents were devastated when they were told theres no treatment for the genetic mutation thats causing her retinas to deteriorate. For the dozen years since Sofia received that diagnosis, her mother has lived every parents nightmarebeing powerless to help her suffering child.

Now a gene therapy for a similar form of blindness is expected to receive U.S. Food and Drug Administration approval this year, and Laura Manfre, Sofias mom, is holding out hope that her daughter may soon get treatment as well. “We dont really care what it costs,” she says.

But how much is a miracle really worth? A million dollars? Five million? More? And who will pay and how? Its one of the most vexing challenges confronting drug and insurance companies as modern medicine advances, spurred by research on the human genome. Spark Therapeutics Inc., which developed the gene therapy to cure a rare form of childhood blindness called RPE65-mediated inherited retinal disease, is among the first to face this question. Sparks treatment, voretigene neparvovec, delivers a functioning piece of DNA directly to the eyes to preserve remaining sight and even restore some vision. Other companies, including GlaxoSmithKline Plc and BioMarin Pharmaceutical Inc., have also been grappling with the pricing problem.

Some new treatments, such as Sparks retina drug, are intended to work with just one shotpromising a lifetime cure from a single, costly treatment. Insurers dont dispute the worth of cures in the pipeline but say theyre not equipped to pay one large sum upfront. The U.S. health-care system is built around managing symptoms with prescriptions that insurers pay reimbursements for monthly: For example, medicines such as cholesterol-lowering Lipitor or acid-reflux drug Nexium are often taken over a period of many years and dont deliver a permanent fix.

Insurers are “used to paying rent for health, and were asking them to buy a houseful of cure,” says Mark Trusheim, a visiting scientist at MITs Sloan School of Management whos leading a working group to explore financing models for upcoming drugs, drawing from examples in the housing market and activist hedge funds.

Spark Chief Executive Officer Jeff Marrazzo sees his companys pricing decision as precedent-setting, as it would be the first gene therapy approved in the U.S. Spark has spent about $400 million to create the treatment and now wants to be compensated for the efforts and huge risks it took during the research and development phase. How the payment debate plays out will determine not only whether patients will be able to gain access to these treatments but also how hard drugmakers will push to develop other transformative medicines. “Why is it that there are not more cures?” Marrazzo says. “Its not because there are bad actors. Its an industry full of people who react to incentive structures.” If compensation could be redesigned to reward one-time treatments over chronic treatments, “thats where people would play,” he says.

One idea under consideration is to spread payments from insurance companies to drugmakers over years, like an annuity. Another is to have a money-back guarantee, so if a drug or treatment stops working for a patient, the manufacturer is on the hook to refund part of the cost to the insurer.

Payback contracts, or “value-based pricing” in pharma industry parlance, are already used in Europe. In the U.S. theyre trickier to execute, because there isnt a single payer with which to negotiate and patients frequently switch insurance plans throughout their lives. Jean-Jacques Bienaime, CEO of BioMarin, proposes creating legislation requiring patients to carry the reimbursement obligation with them when they change jobs or insurers, to ensure drugmakers continue to be paid. BioMarin is working on a gene therapy for the blood disorder hemophilia, which Bienaime argues is easily worth millions of dollars per patient for a cure.

“The average cost of severe hemophilia A is about $500,000 a year, so $1 million upfront would cover two yearsthats not much, if theyre healed for life,” Bienaime says, adding that BioMarin hasnt decided how to price its drug, which is going through trials.

MITs Trusheim is considering more radical payment plans, such as having the U.S. government buy an entire company instead of paying for its drugs. “The government could sell off the research and development arm of a company, like a Carl Icahn,” he says, referring to activist investors who take over corporations, often selling off units that they deem peripheral. The idea is to then have the feds provide the drug to Medicare and Medicaid patients and charge commercial insurers a cheaper price than they likely would have paid to a for-profit private company.

Other ideas that his group is investigating include government grants or prizes to developers of cures, or volume-purchase commitments such as those used by the Bill & Melinda Gates Foundation in developing nations, which guarantee manufacturers that a minimum amount of a drug will be bought if they successfully develop it. Trusheims group plans to publish its recommendations by early next year.

When designing payment models, the size of the patient population matters: The larger the potential impact, the more the system will strain to deal with the huge cost of one-time cures. Thats what Gilead Sciences Inc. learned in 2015, when it launched a cure for hepatitis C at $84,000 for a three-month regimen, or $1,000 a pill.

For anyone facing the prospect of liver cancer or a liver transplant, that $84,000 is a very good value, says Jim Meyers, Gileads executive vice president for global commercial operations. The price was in the ballpark of existing treatments, and “there wasnt a payer we spoke to in market research that felt a price in the $80,000 to $85,000 range wasnt acceptable,” he says.

The drug proved immensely popularfar beyond Gileads expectationsthanks to a quick endorsement by the American Association for the Study of Liver Diseases. About 3 million Americans have hepatitis C, and many wanted the cure immediately. “We started to see a flow of patients well above what any of us anticipated, and a price that made eminent sense to payers suddenly didnt make sense,” Meyers says.

Rather than winning kudos for treating an intractable malady, Gilead quickly became a poster child for high drug prices, an image its fought to shed for the past two years. Meyers warns that the backlash has already spooked others. “What I hear is that they call it the Gilead HCV experience, and by that they mean everything that it entails: the publicity, scrutiny, the payers first accepting then reacting, the Senate Finance Committee,” says Meyers. “Ive heard, Why bother?”

Such market realities may already be reflected in new-drug prices. When GlaxoSmithKline brought its Strimvelis gene therapy to market in Europe last year for the “bubble boy disease” that leaves children without an effective immune system, it picked whats arguably a bargain price: €594,000 ($634,000) for the one-time treatment, equivalent to two years of the enzyme replacement therapy that patients previously had to take for a lifetime.

Martin Andrews, Glaxos senior vice president for rare diseases, notes that the drug could have been valued higher, but he says the company had to bow to economic realities, including the big deficits in European governments health budgets. “We didnt want to have the worlds most expensive therapy that nobody ever used,” he says.

Spark has a few more months to put a price tag on reversing progressive vision loss. Employees are researching court cases involving the value of sight. “How has our judicial system awarded for damages in the case of patients who have lost their vision?” asks Marrazzo. “Thats basically everyday Americans sitting on a jury and answering this question in a way that you cant purely do with hard and fast economics.” Whether that will help its drug reach the market without consumer or government blowback remains to be seen.