#ellen's psoriasis story

[lostlittle-star]

My psoriasis story

I have been thinking for a while to write something down about this. To give it a place, because let's be honest, it fucking sucks and it's ugly.

So here is my struggle, my journey:

The journey until now has been one with a lot of doctors appointments just to figure out what was wrong.

My story started last year when I noticed some sort of rash on my legs. In the beginning it were 3 spots, a couple of days later it were 10 and the next week they appeared on my other leg too, so first appointment at my general practitioner.

First diagnosis: folliculitis (infection/inflammation hair follicles). Remedy: washing myself with disinfectant soap and treat the spots with an antibacterial ointment. It should be getting better at the end of the week.

Wrong. So second appointment.

Second diagnosis: scabies. Fuck! Seriously? Me?! This made me feel ashamed, dirty. I immediately went to the pharmacy and hopped into the shower. Still washing myself with the disinfectant soap, which is making my skin extremely dry, and afterwards the prescribed ointment. New pj's and fresh sheets on the bed, every day. Again, it should be getting better within the week.

Wrong.

Little note, I had a lot of doubts with this diagnosis, I have also a medical background from my time in college (not anymore though). But who am I to go up against the doctor?

The general practitioner is still convinced with the diagnosis. So second week of extreme measurements, fresh clothes and sheets every day, still showering with the disinfectant soap and treatment with the ointment. It should be visibly getting better in days. If it wouldn't, this time I could call.

Well guess what? It was still not getting better. I had now patches on my legs, arms, torso and back. And the diagnosis made it all itch even move. So on Friday I called my general practitioner for the update and miraculously got an appointment with a dermatologist the very next Monday (normally it takes at least half a year to get one).

The appointment with the dermatologist was finally there and I finally got answers. He first checked my fingers for little burrows and smiled a little immediately. Well, I got wrongly diagnosed for four weeks. Finally the right answer I had been waiting for.

The definitive diagnosis: guttate psoriasis. A rare form of psoriasis, less invasive, probably caused by a throat infection. And of course always diagnosed late. Treatment? The same as the typical psoriasis, a corticosteroid foam.

After four weeks, treatment finally started. Since it started so late, the patches on my legs will need a lot more time to heal.

A little flash forward. The most recent patches had disappeared easily after 2 weeks of treatment, it has been 4 months since since the first signs. But those on my legs had healed a lot, the discoloration was still going to be visible for months. Because it needs time, too much time for my liking. It is good it was winter when all this started. At the moment I am writing this, it is already spring and the new batch of patches on my legs are still very visible. And I am struggling with it.

I don't think the dermatologist keep the mental factor in mind. After the diagnosis it's all about the treatment, where and how to apply. For someone who has always been bullied, this is one other blow to the self-esteem.

There are days when it easy, apply lotion in the morning and put on some long trousers and I ignore it for the rest of the day. But there are so, so many days I find it hard to look at my body. And I onow shouldn't be complaining, since it's not as invasive as the typical psoriasis. But I can't help it to struggle with my self image. Will I be able to wear dresses or shorts this summer? Is it going to disappear? Will it come back if all the spots are away?

So, will this story have and end? Will it be like a thread through my life?

This auto-immune illness is one I will have to live with and honestly I get it why no one talks about it and hides it. We all shouldn't.

[pharmaphorumuk]

Patient Insights: Eczema

Ellen Scheib has had eczema for over twenty years, and though drugs have helped her manage the condition there are still many patients with no viable treatment options. She tells us what it’s like to live with eczema and how advocacy can bring hope to people with the skin condition.

How does eczema affect your daily life?

Eczema is extremely dry skin that gets itchy, scaly, red and swollen. When you scratch it, it bleeds and your skin starts oozing.

It’s a very social disease – when you have lesions all over your body you certainly don’t want to go outside and show your skin. I live in Fort Lauderdale, Florida, where the average temperature is 80 degrees Fahrenheit, but I always have to wear long clothes. People stare at you because either you have your lesions showing or you’re dressed like you’re expecting snow.

It took up until two years ago to get a 100% certain diagnosis. Often my skin biopsies would come back showing psoriasis – which is kind of a sister disease for eczema, but one that affects you differently, meaning different medications work for it.

For a while they were treating me for psoriasis with shots I would give myself, which did not help at all.

At one point they even said my biopsy showed T-cell lymphoma, and I was treated with a cancer drug that I took every day for a year.

When I was going in and out of hospital, I would be covered with lesions from my neck down to my toes that were itching, bleeding and oozing. They’d put me on IV steroids, then send me home. But the thing about steroids and eczema is once you come off them you flare even worse. For 20 years I was in the cycle of flare, hospital, flare, hospital, flare, hospital.

“At one point they even said my biopsy showed T-cell lymphoma, and I was treated with a cancer drug that I took every day for a year”

There were days I didn’t want to wake up – you never know when you go to bed what your skin is going to look like the next day.

Two years ago I went to a new doctor who took more biopsies and figured out that I definitely had eczema. That has allowed me to get treatment that has eliminated the problems with my skin.

What are some of the biggest misconceptions about eczema you encounter?

The biggest misconception is that people think it’s contagious, and when they see it they want to stay away from you. To be honest, if I didn’t have eczema it would probably scare me to see someone with it too.

Another big struggle is that people call it a rash. It’s infuriating to be asked how my rash is when my entire body is covered in lesions.

How did you get into patient advocacy?

My daughter has had ulcerative colitis since she was six, so I learned to be an advocate firstly for her and then for myself.

I talk a lot with other patients on Inspire. I feel that the best way you can support somebody is to share your own story and listen to theirs, then share ideas and support each other as much as you can. The support we all have for each other is amazing.

I know that suffering alone is a horrible thing. If you don’t have a disease, you don’t understand it. It’s hard to be truly empathetic towards people.

When I see posts from people who are really suffering, I will reply and offer them my personal email address.

It really helps me too, because I have people to speak to if I’m having a bad day and my skin looks horrible.

One of the guys we met on Inspire is suffering terribly, but where he lives in Africa there’s no medicine that can help him. His wife left him because of his eczema.

It’s really hard supporting someone who you know is in such a desperate situation. We email him every day and see how he’s doing. I’ve made it my goal to make a difference in someone’s life every day. It just makes me sad that I can’t do more.

What would you say are the biggest unmet needs in eczema at the moment?

I’m one of the fortunate ones who has been a true success story on Dupixent, but there are many people out there for whom it doesn’t work or who are afraid to take it because of the side-effects. And everyone I’ve heard of who has the side effects immediately stops taking the drug.

I try to be encouraging to someone who’s on the fence, tell them that they won’t know if it’s going to work unless they try it.

The problem is that Dupixent is the only drug right now for eczema, but so many people are experiencing side-effects that it’s not enough. I see new drugs for psoriasis coming out all the time, but Dupixent is the first drug for eczema, and we need more.

Meanwhile, a lot of dermatologists are more into beauty than skin diseases, and I think that’s why a lot of people are not treated properly. Until I found my current dermatologist, I felt like every office I went into would be filled with beauty products, and they would just tell me there’s no cure and give me more steroids. They just aren’t treating eczema.

“A big struggle is that people call it a rash. It’s infuriating to be asked how my rash is when my entire body is covered in lesions.”

Is there a need to get more information out there to both doctors and eczema patients so they know what to look out for and where to go for help?

Definitely. A lot of people are either too shy or afraid, or just aren’t aware that the resources are out there. It would help patients know what questions to ask their doctor, what to look for when they’re choosing a dermatologist, etc.

Is there any advice you’d give to someone who’s just been diagnosed with eczema?

I’d want them to know that there is hope out there, that there is support out there. They need to find a good dermatologist who’ll diagnose and treat them properly. If somebody on Inspire says they’re in a certain area and they’re looking for a doctor, I try to research that and offer resources.

Patient Insights is a monthly series that appears in partnership with Inspire, a company with an online support community of more than 1.5 million patients and caregivers worldwide.

The post Patient Insights: Eczema appeared first on .

from https://pharmaphorum.com/views-analysis-patients/patient-insights-eczema/

[i-am-very-very-tired]

Jump to navigation Home Healthmonitor Social channels Twitter Youtube Get Our Newsletters Search form SEARCH Search Download Healthmonitor Magazin You are here Home › Your Health Lupus Can’t Keep Toni Braxton Off the Stage R&B superstar Toni Braxton shares strategies for living well with lupus—and why she won’t stop performing. By Ellen Byron Reviewed by Elinor Mody, MD, and Michael H. Weisman, MD Print MailPrint HTMLMore Sharing +-AA+A lupus, signs and symptoms of lupus, Toni Braxton, lupus flare Grammy-winner Toni Braxton has had a whirlwind year, but she’s not complaining. When you’re releasing an album, writing a memoir (Unbreak My Heart, due in March) and chasing after two boys (Denim, 11, and Diezel, 10), it all comes with the territory. Looking at her, you’d never guess just a few years ago a health scare threatened her career. In 2008, Toni collapsed while performing in Las Vegas. In the emergency room, doctors first thought she’d had a ‘baby heart attack.’ “Twenty-three percent of my microvalves and the small blood vessels in my heart were receiving no oxygen,” Toni recalls. Further testing led to a diagnosis. “The blood work was undeniable,” she says. “It showed I have lupus.” Toni discovered lupus is a lifelong disease in which the immune system attacks healthy tissue. It affects about 1.5 million Americans, mostly women, and causes a range of symptoms, from rashes and joint pain to inflammation of the heart, lungs and other organs. “For some, it’s their skin and scalp,” Toni notes. “For me, it’s internal. It loves my heart. It’s like it wants to sit there and say, ‘Hi,’ and hang out.” “They said I shouldn’t perform” Since her lupus diagnosis, Toni has learned to manage her disease with medication and lifestyle changes, including adopting more heart-healthy habits. She follows a metabolism-revving diet, not to lose weight but “because it helps me make better choices.” Toni also exercises daily, doing gentle workouts, like walking on a treadmill or around the neighborhood, to avoid taxing her body. Still, there are times when her lupus symptoms return with full force. In December 2012, Toni was hospitalized when a lupus flare caused blood clots, resulting in a crisis that challenged not only her health but also her career. “The doctors said performing wasn’t something I should do,” Toni reveals. Faced with the prospect of forced retirement, the singer grew depressed. “Retire? No way!” Luckily, Toni’s loved ones stepped in. “I was becoming dark,” she says. “My friends did a ‘Toni outreach program’ and said, ‘We’ve got to get you out of this phase.’ They really helped me,” shares Toni. “I was so tired of being scared. I decided I’m not going to retire; I’m going to live and enjoy life!” Case in point: Toni has been busy making a duet album (to be released in December) with legendary music producer Kenneth “Babyface” Edmonds. But she almost passed on the opportunity. “Babyface said, ‘Let’s do an album together,’ ” Toni recalls. “But I fought him on it, and he said it would be therapeutic.” The result? “It was the best thing I’ve done in five years,” gushes the singer-songwriter. “It’s called Love, Marriage and Divorce—which is my life!” Pages 1 2 Published October 2013 Suggested Reading “I Won My War With Food” Meet Shirley Powell: 2013 PA Semifinalist Don’t Let These Treatment Hurdles Stand in Your Way Roasted Kale Chips “What Do I Tell People About My HIV?” Recent News Health Tip: Apply Mosquito Repellent Correctly Sleep Apnea May Raise Risks for Angioplasty Patients Severe, Untreated Sleep Apnea Linked to Aggressive Melanoma Giving the 'Green Light' to Migraine Relief As Fitness Levels Rise, Diabetes Risk Drops Health Tip: Massage May Help You Sleep Better Devout Women May Enjoy Better Health See More Featured Centers Alzheimer’s Breast Cancer Chemotherapy COPD Diabetes Eye Health Heart Valve High Cholesterol ITP Metastatic Cancer Migraine Osteoarthritis Osteoporosis Prostate Cancer Psoriasis Rheumatoid Arthritis Do one new heart-healthy thing each day for a month. At the end, you’ll have 30 new habits. TwitterFacebook Editors' PicksMost Popular 5 Ways to Make Your Barbecue Healthier Insulin Gave Me a Fighting Chance! Daphne Oz's Stress-Busting Secrets Eat for Strong Bones! Strengthen Your Core With the Plank! See More Share your story Main menu Your Health Your Health Team Your Stories Celebs Inspiration & Motivation Food & Fitness Tools, Resources, Savings Visit Our Other Properties Guide2BoneHealth.com Guide2BreastCancer.com Guide2Chemo.com Guide2Cholesterol.com Guide2Diabetes.com Guide2ITP.com Guide2Psoriasis.com Guide2RA.com Meet Our Experts About Us Advertising Policy Contact Us Privacy Policy Copyright © 2017 Health Monitor Network. All rights reserved. All material provided on the Health Monitor website is provided for informational and educational purposes only and is not a substitute for medical diagnosis, advice or treatment. 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[lostlittle-star]

When life throws psoriasis at you, you get a tramp stamp for free

[lostlittle-star]

Hi!

My name is Ellen

This is my sideblog, my main is linked in my bio

My inbox is always open!

My psoriasis story

[tabloidtoc]

National Enquirer, June 3

Cover: TV’s 25 Most Hated Stars 

Page 2: Hayden Panettiere still with boyfriend Brian Hickerson even after he was arrested for domestic violence 

Page 3: Alex Trebek’s hair is gone but not his hope 

Page 4: Ellen DeGeneres has gone overboard with cosmetic touch-ups in a botched attempt to save her dicey marriage to Portia de Rossi, Miley Cyrus’ girl-on-girl flirting with ex Stella Maxwell is fueling rumors that she and new husband Liam Hemsworth have an open marriage 

Page 5: Cate Blanchett leaves broke and disabled brother to struggle alone, bitter Wendy Williams has spent $300,000 and counting to ensure her estranged husband gets as little as possible in their divorce 

Page 6: Looks like Mark Wahlberg and wife Rhea Durham will soon be parents of five, overworked Carrie Underwood snubs her husband, scared kids beg 80-lb Angelina Jolie to eat 

Page 7: Fired Steve Harvey raging war on replacements Kelly Clarkson and Melissa McCarthy 

Page 8: Sarah Jessica Parker and Matthew Broderick celebrated their 22nd anniversary with a huge public blowout on the streets of London over how much time they spend apart

Page 9: Prince Charles’ links to a pedophile priest have plunged the royal family into a fresh sex abuse crisis 

Page 10: Hot Shots -- Kevin Hart and Eniko Parrish, Brad Paisley, Vanessa Hudgens 

Page 11: CNN’s new headquarters are an utter disaster, Sara Gilbert quit The Talk to save her rocky marriage to musician Linda Perry 

Page 12: Straight Shuter -- Neil Patrick Harris, Billy Bush fears he’ll blow his second chance hosting Extra Extra because A-list celebrities won’t talk to him, hermit-like diva Cher had no idea wireless earbuds exist, Madonna hopes to follow Bruce Springsteen who had a year-long, sold out residency at a Broadway theater with less than 1,000 seats, fashion insiders are concerned about Kimora Lee Simmons after her Big Apple chat with industry icon Fern Mallis was canceled

Page 13: The Kardashians are in panic mode over reclusive brother Rob, smitten Taylor Swift wants to set down roots with boyfriend Joe Alwyn in his hometown of London, the updated BH90210 is a satire focusing on what would happen if the actors got together to film a revival of the ‘90s FOX hit and spoofed their real-life selves 

Page 14: True Crime 

Page 15: Howard Stern confesses he’s in therapy to overcome his narcissism and regrets ripping into celebrities 

Page 16: Bill Murray’s face has been wrecked by potentially deadly psoriasis, Adam Levine is a diva who aggravated onlookers with his bratty behavior during an appearance in NYC 

Page 17: Jonnie Jonckowski’s steamy fling with Neil Diamond sparked his split from his second wife leading to a blockbuster $150 million divorce payout, Tiger Woods is being sued over the drunk-driving death of a 24-year-old bartender who worked at his Florida restaurant The Woods 

Page 20: Cover Story -- 25 TV stars we love to hate -- Rosie O’Donnell, Kris Jenner, Kim Kardashian, Meghan McCain, Farrah Abraham 

Page 21: Alec Baldwin, Kate Gosselin, Megyn Kelly, Katherine Heigl, Rush Limbaugh, NeNe Leakes 

Page 22: Gordon Ramsay, Joy Behar, Lindsay Lohan, Jussie Smollett, Teresa Giudice, Josh Duggar, Ann Coulter 

Page 23: Lori Loughlin, Bill Maher, Matt Lauer, Roseanne Barr, Ryan Lochte, Rachael Ray, Scott Baio 

Page 25: How to head off a heart attack, 80% of readers say Archie is no name for a royal 

Page 26: Health Watch 

Page 29: The camper Dana Plato died in is for sale, devastated by the deaths of her parents Paula Abdul is launching a Las Vegas residency to jump-start her career and her life 

Page 32: Wedding bells for Rami Malek and Lucy Boynton, Rihanna seems ready to reconnect with abusive ex Chris Brown, Hollywood Hookups -- Kathie Lee Gifford’s son Cody to wed actress Erika Brown, Hilary Duff is engaged to Matthew Koma 

Page 36: Tim Conway’s dying regret, Doris Day took steamy secrets to the grave 

Page 42: Red Carpet Stars & Stumbles -- Millie Bobby Brown, Olivia Wilde, Julianne Hough, Naomi Scott 

Page 45: Spot the Differences -- Prince William and Kate Middleton 

[tabloidtoc]

Globe, January 21

Cover -- Burt Reynolds Murdered a Man And Got Away With It 

Page 2: Up Front & Personal -- Beyonce, Simon Cowell, Randy Jackson 

Page 3: Courteney Cox, David Duchovny, Nicki Valentina Rose 

Page 4: Cover Story -- Burt Reynolds killed a love rival with his fists in jealous showdown 

Page 6: Burt Reynolds beat his women too 

Page 8: George Strait retiring after seven-concert tour 

Page 9: Whiner Jennifer Aniston insists she’s not pretty, Angelina Jolie thinking of a political career 

Page 10: Prince Philip, age 97, is being kept alive by a speed cocktail so he can live to see Prince Harry’s baby 

Page 12: Celebrity Buzz -- Lee Radziwill pushed Julia Roberts out of her seat next to Prince Charles at the London premiere of Steel Magnolias, Kevin Spacey charged with indecent assault and battery on a minor, Roseanne Barr has been invited to speak before Israel’s congress about prejudice against Jews, Disney exec are getting rid of Johnny Depp to bring new energy and vitality to the Pirates of the Caribbean franchise, Julie Andrews glad she turned down a cameo in Mary Poppins Returns and is delighted the remake is a flop, Blake Lively 

Page 13: Jaclyn Smith, Tim Robbins, Steven Van Zandt, Hook-Ups, Babies & More 

Page 14: Jon Gosselin thrilled to have one of his kids at home with him, Sherri Shepherd sent out a weird SOS on social media asking fans for money to get home, Fashion Verdict -- Vivica A. Fox, Michelle Obama, Ellie Goulding, Jennifer Lopez, Hailee Steinfeld 

Page 16: Ellen Pompeo quitting Grey’s Anatomy because incurable asthma taking a tragic toll 

Page 18: 10 Things You Don’t Know About -- Keanu Reeves, Keira Knightley nearly quit acting in her 20s after her sudden stardom caused her to have a breakdown, J.D. Madison busted for writing a bad check less than four months after being accused of sex assault 

Page 20: True Crime 

Page 24: Hollywood Body Disasters -- Katie Holmes, Ben Affleck, Tori Spelling, Caitlyn Jenner, Madonna, Chrissy Metz 

Page 25: Anna Faris, Farrah Abraham, Demi Moore, Clint Eastwood 

Page 26: Tara Reid, Kim Kardashian, Rihanna, Barry Manilow, Iggy Azalea, Mischa Barton, Emily Blunt 

Page 28: Kurt Russell, Gerard Depardieu, Antonio Banderas, Michael Douglas, Jennifer Garner, CoCo Austin, Sandra Bullock, Teresa Giudice 

Page 30: Bull star Michael Weatherly took teen Jessica Alba’s virginity 

Page 32: Health Report -- Shampoo triggers girls early puberty 

Page 34: Straight Talk -- No-talent Paris Hilton can’t fill distant relative Zsa Zsa Gabor’s pumps, Spot the Evil Twin -- Adrienne Banfield-Jones and Robin Roberts 

Page 41: Glen Campbell’s widow wins war over will as cash crunch forces his disinherited kids to drop lawsuit, Kim Kardashian begging fans for tips on treating psoriasis 

Page 45: Paul McCartney regrets that The Beatles never got back together, Chris Brown charged with failing to obtain an exotic animal permit for a baby capuchin monkey he got for his daughter, Spot the Evil Twin -- Kane Brown and Theo Von 

Page 46: Hollywood Flashback -- Ernest Borgnine in The Devil’s Rain