#Rare disease support

[noisycowboyglitter]

Celebrate Rare Disease Day with Butterfly Heart and Zebra Ribbon Themes

Ribbon Rare Disease Awareness campaigns utilize specially designed ribbons to draw attention to a variety of uncommon medical conditions that often receive less public recognition and research funding. These ribbons serve as powerful symbols, uniting patients,

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families, healthcare professionals, and advocates in their efforts to increase understanding and support for rare diseases.

Each rare disease typically has its own unique ribbon color or pattern, helping to distinguish and highlight specific conditions. For example, the zebra-striped ribbon represents rare diseases as a whole, while a light blue ribbon might signify Addison's disease, or a green ribbon with a butterfly might represent mitochondrial disease.

These awareness ribbons are used in various ways:

Worn as pins or badges

Incorporated into social media profiles and campaigns

Featured on promotional materials and educational resources

Used in fundraising events and charity walks

The primary goals of Rare Disease Awareness campaigns include:

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Educating the public about the challenges faced by those with rare diseases

Advocating for increased research funding

Improving diagnosis rates and treatment options

Fostering a sense of community among affected individuals and their families

Encouraging policymakers to address the unique needs of the rare disease community

By wearing or displaying these ribbons, supporters help spark conversations and raise vital awareness for conditions that might otherwise remain invisible to much of society.

"Butterfly Heart Believe Zebra" is a unique combination of symbols often associated with rare disease awareness and personal transformation. The butterfly represents change and hope, while the heart symbolizes love and support. "Believe" encourages faith and perseverance in the face of challenges.

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The zebra is particularly significant in the rare disease community, stemming from the medical phrase, "When you hear hoofbeats, think horses, not zebras." This reminds doctors to consider common diagnoses before rare ones. However, for those with rare diseases, the zebra has become a symbol of uniqueness and the importance of looking beyond the obvious.

This collection of symbols is often found on awareness merchandise like t-shirts, pins, or posters. It resonates with individuals affected by rare diseases, their families, and advocates, serving as a reminder of strength, community, and the ongoing journey towards recognition and improved care.

Butterfly Gifts for Mum offer a delightful way to show appreciation with a touch of natural elegance. These presents often feature charming butterfly motifs, symbolizing transformation and beauty. Options range from butterfly-themed jewelry like necklaces or brooches to home decor items such as cushions or wall art. For

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garden-loving mums, consider butterfly feeders or plants that attract these graceful creatures. Personalized gifts like photo frames or mugs adorned with butterflies add a sentimental touch. These thoughtful presents celebrate the nurturing and transformative role of mothers, making them perfect for birthdays, Mother's Day, or just because.

[cbccindia]

Supporting World Haemophilia Day: Advocacy for Improved Care and Treatment

Join us on World Haemophilia Day with CBCC Hospital in Raipur, Trichy, and Agartala. Join us in raising awareness and advocating for better treatment and care for those living with this rare bleeding disorder. Support the cause and help ensure vital resources for our community members affected by haemophilia.

[charismaticcollector]

fellow terminally ill people, i love you.

i hope your happy if you decided to spend the rest of your life filling out a bucket list.

i hope your happy if you decided to spend the rest of your life partying until you drop.

i hope your happy if you decided to spend the rest of your life continuing as normal, working a job and getting groceries and the like.

i hope your happy if you decided to spend the rest of your life resting and relaxing as much as you can.

i hope your happy if you decided to spend the rest of your life trying to find a cure of some sort.

i hope your happy if you decided to spend the rest of your life aware and okay with the fact you are going to die.

i hope your happy if you decided to spend the rest of your life working towards the future, even if you might not see it.

i hope your happy if you decided to spend the rest of your life with your loved ones, giving them memories to last their lifetime.

i hope your happy if you decided to spend the rest of your life focusing on yourself, not letting anyone else hurt you again.

i hope your happy if you decided to spend the rest of your life seeing the world.

i hope your happy if you decided to spend the rest of your life staying at home with your cat.

i hope your happy if you decided to spend the rest of your life doing anything, because you deserve it.

[iamyouknow-yours]

I don't know what they're like in other countries but Rare Diseases South Africa is a fantastic organisation.

If you have, or suspect you have, a rare condition, look up Rare Diseases International or Rare Diseases (your country name)

RDSA has given me access to a wonderful POTS support group chat, and they help you deal with medical aid for free, and offer free counselling. The support group has really changed my life though and I've made friends and gotten such good advice.

They also host webinars sometimes that have been so useful and interesting. There was one about medical aid when you have a rare disease, and one about dealing with fatigue. There's one coming up about exercise when you've got CFS/ME or fatigue is one of your symptoms.

There's also a registry of doctors for every province that know about POTS and people have had good experiences with.

[animal-123-crazy]

Never going to understand the appeal of living in a city of steel, glass, and cement, surrounded by people 24/7 and always and forever having someones eyes on you.

No thank you.

Give me my grass, trees, dirt, and the brick and mortar home with vines growing up its sides. Where i can sit in my backyard and shoot my arrows without being watched like a bug on a steel platter.

Signed, a country bumpkin.

(

[averinthine]

stop calling medical conditions rare when i literally have them

[aartichede08]

Rare Diseases Treatment Market research report provides comprehensive information on the market. It also includes in-depth information about Market #Drivers, Opportunities, Market Restraints, Market Growth #Challenges and Cumulative #Growth Analysis. Moreover, the report also provides an in-depth analysis of the Rare Diseases Treatment Market by identifying key players. The report also examines the #competitive landscape of the Rare Diseases Treatment Market industry and analyses its impact on the growth of this market over the next few years. The segmental analysis focuses on revenue and forecast for the period 2019-2029.

Request PDF Sample Copy of Report @ https://www.axiommrc.com/request-for-sample/11524-rare-diseases-treatment-market-report

[pokichusramblings]

Y’all can barely handle asexuals either. I am filled not with rage, but disappointment at the lack of support within our own community for orientations that ARENT EVEN THAT UNCOMMON-

"We need more weird queer people!" Apparently y'all STILL can't even handle aromantics

[financia012]

If I Had a Million Dollars to Give Away: Where Would It Go?

If you had a million dollars to give away, who would you give it to? Introduction Imagine the power of giving away a million dollars! For many, this opportunity would allow them to impact lives, support causes close to their heart, and create meaningful change. In this blog, I’ll explore how I would allocate a million dollars and why the causes I choose align with my values. Let’s break down…

[unboundprompts]

Pirate Terms and Phrases

-> Pirate Lingo

-> A Pirate's Glossary

Batten Down The Hatches - tie everything down and put stuff away for a coming storm.

Brig - a prison on a ship.

Bring a Spring Upon 'er - turn the ship in a different direction

Broadside - the most vulnerable angle of a ship that runs the length of the boat.

Cutlass - a thick, heavy and rather short sword blade.

Dance with Jack Ketch - to hang; death at the hands of the law (Jack Ketch was a famed English executioner).

Davy Jones's Locker - a mythical place at the bottom of the ocean where drowned sailors are said to go.

Dead Men Tell No Tales - the reason given for leaving no survivors.

Flogging - severe beating of a person.

Gangplank - removable ramp between the pier and ship.

Give No Quarter - show no mercy.

Jack - flag flown at the front of the ship to show nationality.

Jolly Roger - black pirate flag with a white skull and crossbones.

Keelhaul - a punishment where someone is dragged under the ship. They are cut by the planks and barnacles on the bottom of the ship.

Landlubber - an inexperienced or clumsy person who doesn't have any sailing skills.

Letters of Marque - government-issued letters allowing privateers the right to piracy of another ship during wartime.

Man-O-War - a pirate ship that is decked out and prepared for battle.

Maroon - to leave someone stranded on a. deserted island with no supplies, typically a punishment for any crew members who disrespected the captain.

Mutiny - a situation in which the crew chooses a new captain, sometimes by forcibly removing the old one.

No Prey, No Pay - a common pirate law that meant crew members were not paid, but rather received a share of whatever loot was taken.

Old Salt - experienced pirate or sailor.

Pillage - to steal/rob a place using violence.

Powder Monkeys - men that performed the most dangerous work on the ship. They were treated harshly, rarely paid, and were expendable.

Privateer - government-appointed pirates.

Run A Shot Across the Bow - fire a warning shot at another boat's Captain.

Scurvy - a disease caused by Vitamin C Deficiency.

Sea Legs - when a sailor adjusts his balance from riding on a boat for a long time.

Strike Colors - lower a ship's flag to indicate surrender.

Weigh Anchor and Hoist the Mizzen - an order to the crew to pull up the anchor and get the ship sailing.

If you like what I do and want to support me, please consider buying me a coffee! I also offer editing services and other writing advice on my Ko-fi! Become a member to receive exclusive content, early access, and prioritized writing prompt requests.

[charismaticcollector]

hi! i have multiple genetic defects, primarily focusing on collagen production. i won't name my specific main disorder as only 70 people in my country have it, and thus it would be identifying. the primary symptom is myopathy, my muscles are extremely weak, though it can vary day to day. this includes muscles involved with organ function (like lungs, GI.) my nerve casings are very thin causing damage and polyneuropathy. my neck and back are extremely unstable due to lack of supportive muscles, which has resulted in a cervical spinal cord injury with paralysis and everything that comes with that. i have lots of vision difficulties because of how my eye muscles don't move nor are my eyes formed quite right. the muscles in my mouth and throat don't move enough to speak, if i could even breathe enough for it.

and then i also have a skull deformity, autoimmune disease, whole separate pentad of disorders, and what is diagnosed as severe ASD because fuck me haha.

i use a power wheelchair, gjtube, noninvasive ventilation, and high tech AAC all fulltime. i don't always post about myself as formulating posts is very hard, but i hope to do it more.

it makes me sad that the same few conditions consume disability discussions. the disability community is so diverse and I know there are other people out there who have diverse experiences. I think the community needs to do a better job of lifting up the voices of people with rare conditions (or even just conditions that aren't spoken about) I want to hear from people who have different experiences from mine. people with rare diseases often have very unique experiences and it's really shameful that we don't get to hear those voices very often.

anyways, if you have a rare disease (hEDS is not rare) or a condition that isn't talked about often feel free to promote your blog or share something on this post.

[missnikkiann]

Recently, I was on our Twitter friend LupusChick's podcast:

Empowerment in Illness.

I was able to tell my story, and, hopefully, that testimony about my Progressive Illness may help at least one person.

LupusChick was my first Chronic Illness and Spoonie friend on Twitter (back in 2007, when it truly was "Twitter").

If you don't know what a "Spoonie" is, you can research: The Spoon Theory.

LupusChick and I found so many Twitter Spoonies who were living with very aggressive illnesses while we all were trying to maintain a peace that surpassed our own understanding.

Being debilitated by illness can be very isolating; LupusChick had taken me on as a little sister.

When I wasn't at my modified "best" (Spoonies get that!), she took it upon herself to fly from one end of the country to another, just to boost my spirits and ensure that I would definitely be okay.

Before I end, I want to mention something that often gets lost in the chronic healthcare circus: caretakers.

The information we provide is just as important for those tending to the chronically ill, as it can be a disorienting and overwhelming task for us veterans, let alone those dealing with newly diagnosed loved ones and patients. I'd suggest caregivers find and read: The Spoon Theory. It's a quick read and gives the most essential information that is needed from day one.

Lastly, I thank you in advance for showing patience with those patients whose illnesses cause cognitive issues.

I have a degrees in English, Political Science, and Business Management; I also did my Masters in Journalism, but my illness doesn't care about those accomplishments and is determined to deteriorate whatever "brilliance" I once had with words. So, many mistakes will be made and handled without much fuss (to do otherwise would only trigger more of my determined mini-strokes).

Be good.

Be patient.

Be in the moment.

~MissNikkiAnn

LupusChick's Twitter:

https://x.com/lupuschick?t=yL3F0lvlF-tt6JwBSwl6RQ&s=09

[hebakh11]

I am Hiba Khader, a mother of three children, now living with my sons in Gaza.

You know the situation in Gaza, for more than a year we suffer every minute we live.

I had a beautiful life, but the war destroyed everything, destroyed my dreams, I lost my job, my whole house was turned into rubble and our car became a wreck.

I suffered the horrors of war every day in Gaza, we were struck by fear, terror, cold, and severe hunger, and my children were afflicted with diseases due to epidemics.

Food is very expensive, and if we find it, we do not have the money to buy it, and the same applies to medicine.

I sleep at night crying because my children go to bed hungry and I cannot feed them.

I search every day for a piece of bread for my children so that we can stay alive, and I rarely get help.

I live in a poor tent made of cloth that does not protect from the heat of the sun during the day, the cold of the night, or the rain of winter.

I move and flee from one place to another to escape danger, but danger is everywhere.

I wish this war would end while we are alive so we can live in safety and have a home where we can forget the painful suffering of war and bring a smile back to my children's faces and create for them a life they deserve. Please 🙏 help us survive so we can live a better life ❤️.

[fred-the-dinosaur]

also well done Reddit I was finally using Reddit regularly again a bit and now my LAPTOP DIED so I only have MOBILE DEVICE ACCESS so I guess NO MORE REDDIT AGAIN fucking cockwombles with their no third party apps

YES i could log in in mobile browser NO I'm not going to because they ARTIFICIALLy FUCK mobile users over by no API for third party apps! And No ndfw content unless logged in! Oh and THIS FORUM might be NAUGHTY because we didn't CHECK YET SO log in and prove you're over 18 so you can go on a REDDIT that turns out to be about BEES or your currently most main RARE ILLNESS or tells how to make your CONFUSING DRAWING APP DO BASIC FUNCTIONS

So No! NO LOGIN FOR YOU until you stop creating hostile design choices to force people onto your OWN APP no I wouldn't use it even if it was good because I am TOO ANGRY and I used to be a WEB DESIGNER and I HAVE STANDARDS

[chatsukimi]

ᴄᴏᴜʀᴛɪɴɢ ᴅᴇᴀᴛʜ

featuring: protective!heian!sukuna, kindhearted!servant!reader. slight angst/hurt -> comfort. synopsis: you're sick. to your surprise, you're rescued by the man second closest to death himself. masterlist

you should've known he wouldn't come. sukuna has never set foot in the servant's headquarters in his life, let alone to chase after a sick servant. you lower your head, trying to ease the headache that has plagued you through the day.

sukuna loves his bloodshed and his gore. him and death would be good friends, you think to yourself. he wouldn't care if your body was burnt or buried, you think to yourself; wouldn't care if you died at all.

the room the others put you in is empty. ash spreads neatly over the cold floor. the scent of kibble haunts the atmosphere. it's where they put the dogs before sukuna killed them.

ever since you took care of the king of curses while he was sick, the other servants had been careful in keeping a distance from you. not in ill of heart; they're simply terrified at what you must've done to survive in your week long stay with the monster. honestly, you don't blame them.

but now when you're laying on the freezing ground, struggling to breathe, it's hard not to.

'this is where you live?'

your eyes look up. shock. then, with all the strength you can muster, you heave yourself one step away from the man at the doorway, which only serves to piss him off more.

sukuna ryomen, in all his glory, looks down at you. bending down to pick you up like a limp doll to be seated against the wall, he seems to revel in his regained strength. you can't help but feel happy for him, to have survived this fatal disease. not many men can attest to that...

then again, he is no ordinary man.

'i asked you a question.'

you nod, a small thing, barely a movement. he seems to clench his teeth.

he takes off his long white coat, flaunting a layer of dried blood, and drapes it over your shoulders.

yet it doesn't end there. he retrieves from his pocket a bottle of what looks to be a golden syrup.

you know exactly what it is.

he takes your hand and wraps it around the flask, making you hold it, sparing, not one, but two of his eyes, to stare at you, making sure you do as he commands.

'swallow.'

you shake your head. you know he's asking you to do. this is a medication is so rare for your disease that no sorcerer has found in over a hundred years. he's brought this thing of myth right to your very lips. now he's asking you to drink it, and thus take away any chance of it saving anyone else's life.

you scowl, but the tickling sensation in your throat grows stronger, eventually erupting out of your mouth in a harsh cough. you look away from sukuna.

'leave,' you whisper, weakly. 'don't wanna infect you.'

'i survived the illness already. i've developed an immunity.'

you shake your head again. you couldn't threaten your king's health with your own weakness. you just couldn't.

'i can't take this.'

he growls. without any notice, he swallows your lips in a kiss. in the momentary haze, you could hardly resist, fisting the front of his kimono to ground yourself. then, you feel something sweet, honey-ish, hit your tongue.

with his hand locked on your chin, it forces you to swallow.

you pull back, pushing him away. he groans.

he wipes his mouth, still with two eyes staring.

no... no, why did he do that?

'y-you- how? no... why did you waste it on me?' you whisper, desperately searching his face for an answer. 'i'm just a servant. you could've given it to a princess, or a scholar, or priest-'

he grabs you by the arm and forces you into his arms. its heat astounds you, and you find yourself crawling closer. a vague thumping sound seems to press against your ear-

oh. you calm your breathing.

it's his heartbeat.

alive.

'sleep in my room tonight,' he demands.

what did he say? you strain your mind, trying to replay what he said earlier. no... maybe you heard correctly.

'but i'm no concubine,' you respond, instantly.

his arm supports your waist, helping you up effortlessly to your feet. he then directs two of his eyes to the doorway, his cadence low and domineering.

'it doesn't matter.'

he leads you placidly through the servant's quarters. you notice all conversation cease at your entry, bodies dropping into a low bow. a small voice in you whispers that it's where you should be too. you tug at sukuna's arm.

'i'm only a servant, sukuna.'

you know what it looks like, a servant clutching onto a man, more god than human. a man who has slaughtered villages, blood staining the base of his kimono crimson, and turned half a province on its head, just to save you.

'whatever you are in my eyes is what you are to the world,' he states, his expression unchanging. 'if i deem you a queen, that is who you are.'

exiting the servant compound, you know you can't say no- not like you wanted to. the wide expanse of his chest is comforting.

yet however sweet this feeling remains, you can't help but gulp. perhaps this is the closest a human has ever come to courting death.

[basel1995s]

My name is Basel Ayyad, a 28-year-old Palestinian from Gaza. My family of eight was forced to flee the home that once held our memories and dreams in northern Gaza, after it was destroyed by the war. We now live in a small tent in Rafah, in the south, without shelter to protect our dignity or resources to sustain us. Our lives have shifted from stability and safety to unimaginable suffering, as we endure the cold, hunger, and fear, deprived of the basic necessities of life.💔🍉

In the south, we struggle daily just to survive, facing severe shortages of basic resources and skyrocketing prices. Starvation looms over us as we desperately search for a way to feed our children. But the greatest pain is watching my daughter, who suffers from a rare disease that affects her growth and vision, deteriorate before my eyes due to the complete lack of medical care and essential supplies.

We appeal to anyone with a heart full of compassion to stand with us in this devastating ordeal. We are in desperate need of food and basic aid. Every donation, no matter how small, is a lifeline that could save us from this nightmare. You are our last hope to save our lives and the lives of our children.🙏🙏🙏🙏