dara torres

If Psoriasis Makes You Embarrassed of Your 'Beach Body,' Olympic Swimmer Dara Torres Has a Message for You

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For many people with psoriasis, a flare-up means going outside in shorts or a swimsuit seems out of the question. But take it from five-time Olympic swimmer Dara Torres, who’s been forced to confront this dilemma over and over since her diagnosis with psoriasis 25 years ago — you can show off your “beach body” in the summer, and you should if you want to.

Torres, 50, is advocating for psoriatic disease this summer as part of the sponsored Show More of You campaign. She told The Mighty she first began noticing red, itchy patches while she was training for her third Olympics, the 1992 games in Barcelona. “I was in a swimsuit and everyone could see everything,” she said. “I was embarrassed by it and put lotion on it and thought it would go away, but it got worse.” 

She was soon diagnosed with plaque psoriasis, which flares up when she gets stressed. Back then, she said people weren’t as educated about psoriasis and psoriatic diseases as they are today, and she felt self-conscious knowing it could flare when she was stressed about an upcoming meet.

“No one had [the] nerve to come up and say anything. But you can tell when people are looking at you, and I felt like people were looking at me. Back then, people thought they would get it,” Torres said. “People thought if they touched me and it hit their skin they would get it or if they were in the pool with me, then they would get it, too.”

But those misconceptions simply aren’t true — psoriasis is not contagious and is actually common (approximately 7.5 million Americans have psoriasis, and up to 30 percent of those may also eventually develop psoriatic arthritis). It’s also treatable with the help of a dermatologist.

That’s why Torres is partnering with Celgene’s Show More of You campaign, which seeks to raise awareness of psoriatic disease and show people with psoriasis they can still be their true selves this summer. Torres said she became more confident in her body when she realized, as she says, “my business suit is my swimsuit.”

“I couldn’t not be confident, I had to follow my dreams and continue swimming. I couldn’t not go to the Olympics because I had psoriasis,” Torres said.

And she has a message for others who might feel embarrassed or ashamed of their psoriasis this summer: talk with a dermatologist about treatment options, and get out there.

“[The campaign] is sharing other people with psoriasis’ stories and saying hey, it’s OK. We want to give them confidence to know that they can go out — ‘show more of you’ is really a great name,” Torres said. “Everyone in the world knows bodies come in all shapes and sizes and you shouldn’t be discriminated against for that.”

Photo by Martin Schoeller

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What It Was Like Growing Up With Psoriasis as an African American Woman

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I am an African-American woman in her 50s with very dark skin who in addition to battling psoriatic arthritis since my 40s, has battled plaque psoriasis — the scaly skin that itches and flakes — all of her life, erythrodermic psoriasis — the best way to describe this is that my whole body goes on fire — several times in my life, and guttate psoriasis — spots that covered my entire body — at one point in my life.

What’s been especially challenging in my lifelong struggle with psoriasis has been the general lack of information as well as a medical community lacking in knowledge when it comes to psoriasis in people of color.

When I was a teenager I used to go to the library and try and find pictures of someone who looked like me. I spent countless hours searching for just one photo. After months and months of searching and coming up with nothing, I believed I was alone in this world and there was no one like me with psoriasis.

I did find some photos of Caucasian people with psoriasis, but their psoriasis never looked like mine — nowhere close. My psoriasis was always very dark and thick.  They had red or pink patches of thickened skin that were covered with whitish scales, just like the articles that described what psoriasis looked like. This was not me.

In the town where I was raised, we didn’t have a physician who knew anything about psoriasis. At the age of 5, I was taken to the nearest town that had a dermatologist. When I started going to this doctor, a Caucasian male, he actually looked directly at my skin and said he knew I had psoriasis by my white silvery scales.

As a child of color, this was extremely confusing because, guess what: I didn’t have white silvery scales on me!

Then over the next 40 years, I went to many doctors.

One doctor would tell me he knew I had psoriasis because it was on the back of my elbows and on the front of my knees. This was odd and very funny to me since I had psoriasis over 70 percent to 80 percent of my whole body, my whole life, not just my elbows and knees.

Not only did every doctor I went to tell me a different story — they put me on a different treatment. I remember seeing a doctor who gave me a tube of cream. Now, remember, for most of my life, 70 percent to 80 percent of my body has been covered with this disease, and putting creams on me made me a wet, greasy mess — not a great look for someone who worked in the corporate world. What’s more, the tube only lasted for two days.

I saw a doctor in my early 20s who started me on an ultraviolet light treatment. It started working pretty well for my psoriasis. My dermatologist decided that he needed to keep me in the box longer because the light needed to penetrate my dark skin — his exact words.

Well, that backfired: I was burned over my entire body. I had to take a week off from work and go to a burn specialist.

Needless to say, I never went back to that doctor, but I never openly questioned authority either; I just wasn’t raised that way.

When I was in my 40s, someone told me my skin was different from people who are not like me. They said I needed a doctor who knew about black skin. I believed this; mostly because I was always covered in psoriasis that never got better and my psoriatic arthritis started to kick in really bad at that time. Also, there were not many doctors of color when I was growing up, and definitely not many knowledgeable about psoriasis and psoriatic arthritis.

So I set out to find a doctor of color who specialized in psoriasis; I found one. While in the care of this doctor I developed the worst case of psoriasis ever, erythodermic psoriasis which is a rare and serious condition that makes most the skin surface and the body inflamed and you have intense shedding. I had severe itching and pain. I went to this doctor in tears and horrible pain. I actually thought I was going to die. I looked like something out of an alien movie.

The dermatologist looked at me and said, “I don’t know what to do for you.”

Well, right then and there, I knew the color of my doctor didn’t matter!

That day I made up my mind to search out and find a good doctor who specialized in psoriasis. I did my research and found three in my area. I made appointments with them the following week.

The first dermatologist I went to took my hand and said, yep, you have psoriasis. He wrote me a prescription for cream.  Remember, I am still 90 percent covered at this time and in the worst pain ever. I never went back.

The second dermatologist spent over 35 minutes with me. He examined my skin, nails, scalp and did blood work. He asked if any of my family members had psoriasis. He asked what had been happening in my life. He asked if I was under any stress, had a recent illness, and what kind of medication I was on. There was no need to see a third doctor; I was in love with him that first day. No one ever took that much time to actually find out about me.

He is Caucasian and the best doctor ever. I have been with him for 11 years and have never looked back.This is what I learned: When it comes to finding a good doctor, color should never come into play.

But how can you find a good doctor?

You need to have a good understanding of psoriasis before your appointment. Make sure you have a list of questions to ask, such as what causes psoriasis, how do you diagnose it, what can trigger flare-ups, what are the risks of my medications, and can you treat it?

You need to educate yourself. Right now I know just as much about my psoriasis (and psoriatic arthritis) as my doctor does. And never be afraid to question authority. I wasn’t raised that way but I’ve learned to speak up for myself and others with psoriasis and psoriatic arthritis.

The color of your doctor doesn’t matter, but my personal opinion is that if you are a person of color that you should consider getting a biopsy if the doctor doesn’t know for sure what you have. Back in the day when dermatologists thought that people of color didn’t get psoriasis, getting a biopsy was the only way to prove it. However, we have so many knowledgeable dermatologists today that they might just be able to examine your skin and tell if you have psoriasis.

Indeed, finding a good dermatologist is the key. Just getting the proper treatment has its benefits. When I finally found the right doctor and proper treatment, I became 90 percent clear and felt 100 percent better. Getting the proper treatment changed my life.

Unfortunately, awareness for psoriasis (and psoriatic arthritis) is low in the African American community and other minorities. My goal is to help find more research and bring more awareness to this disease so that we can get the proper treatment that is needed.

Over the years I have been an active advocate for psoriasis and psoriatic arthritis, and I am now Executive Director of the nonprofit Psoriasis Network Support.

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Thinkstock photo by ASharpPhoto

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Why I'm Afraid Every Time I Hear 'Repeal and Replace'

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Every day, I turn on the news to see another story about big plans to change health care.

As a patient living with a chronic illness, I’m scared about the future of health care. I’m scared every time I hear the phrase “repeal and replace.” I’m scared about what these proposals mean for my health, my ability to access necessary treatments, and how I’ll pay for my health care without going into bankruptcy.

If you’re a patient like me living with a chronic illness or condition, I bet you’re scared, too.

The Affordable Care Act and the Maryland Health Benefit Exchange were important steps in expanding health care coverage for many previously uninsured patients in Maryland. More work is needed to help insure those without coverage. However, all the politicians and health care experts seem to have forgotten something: coverage isn’t care.

Insurance companies have no problem selling us coverage but then fight us every time we try to access the treatments we need. Before the Affordable Care Act, I fought tooth-and-nail with my insurance company to fill my prescription. After the Affordable Care Act, I still fight to access the treatments my doctor says I need to survive each and every day.

I know firsthand that coverage isn’t care. I’ve lived with psoriasis for more than 50 years and psoriatic arthritis for 25 years. The first challenge was getting the right diagnosis.

At 5 years old, 8 percent of my body was covered with flakes and scabs, the cause of which no one could immediately diagnose. I wasn’t allow to go to school with everyone else because they feared I was contagious.

My parents finally found a doctor in a nearby town who said I had psoriasis, an autoimmune disease characterized by a faulty immune system that speeds up the growth cycle of skin cells. It affects as many as 7.5 million Americans and 125 million people worldwide. Its impact is significant, causing embarrassment and discomfort, and in some, difficulty standing or sitting for long periods of time or using their hands.

We have come a long way since 1963 when I battled to get the right diagnosis. We haven’t come far enough. Though I’ve lived with it for more than two decades, I was only properly diagnosed with psoriatic arthritis just 10 years ago.

Between the two conditions, it has taken me decades to reach some level of control over my condition. If you’re a patient living with a chronic disease, you know the relief that comes when you finally discover the right treatment. I found a prescription that allowed me to wake up in the mornings, capable of standing and walking.

Unfortunately, my health insurance company did not feel this was proof enough to approve my doctor’s prescription.

Now, I must fight with my insurance company every three months through phone calls, paperwork and appeals so I can receive my correct dosage of medication. This is an issue that millions across the country are facing, whatever their particular ailment is.

What are we to do? Is anyone listening to us? We depend on our treatments, drugs, and medications each and every day. Is there anyone that will look out for us?

Patients can’t take the chance that another big health care law will deliver coverage without care. We need to speak up. I may be afraid, but I’m turning my fears into action.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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Thinkstock photo by monkey business images

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When a Hairdresser Refused to Cut My Hair Because I Have Psoriasis

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My hair is getting long, and I need to get it cut. I haven’t even gotten a trim since last spring. Because when I went to get a couple inches cut off seven months ago, I was refused service because of my disability. You see, I have psoriatic arthritis.

I have always had psoriasis — my mom said I was born with it. But in 2015, after a fall, I was diagnosed with psoriatic arthritis. I was rendered unable to walk within days and had a steep uphill recovery just to get back to walking around daily with a cane, which I had never used before. Psoriasis that had always been annoyingly ever-present on my scalp was now everywhere.

Having always had psoriasis on my scalp, I had experienced hairdressers giving me advice for products or asking me how much it bothered me. Even inexperienced hairdressers knew what it was and that it wasn’t contagious, even if they had never seen it firsthand.

In March, I decided my hair was too long and wanted just a few inches off. I walked into a salon attached to a Wal-Mart and requested a hair cut. There was one hairdresser working who had a client just finishing up. As she appraised me, she seemed to slowly register my cane and obvious disability. This was not unusual, since I’m in my early 30s and don’t necessarily look like I should have to walk with assistance. So I grinned and bore it, just as I expected to have to. But the words that came out of her mouth were unexpected.

“What’s your diagnosis?”

“Excuse me?”

She pointed to my forehead where you could see my psoriasis creeping below my hairline. “What’s your medical diagnosis? I can see something’s wrong.”

I hoped it was the distance between us that left her visually confused, so I tried to assure her it was only psoriasis, expecting that to allay any fears.

“Um… I can’t cut your hair. I don’t know what you have.”

“It’s psoriasis. I have psoriatic arthritis. It’s a skin disorder, but it isn’t contagious.”

“Well, I’d have to ask my supervisor and she’s not here. I can’t cut your hair.”

I was in shock. I knew that people with disabilities were discriminated against. I’m in social work and have worked with people with disabilities in both my personal and professional life, but had not personally experienced it since my diagnosis. I had been trained and had practice defending other people’s rights, but now it was my rights that were being trampled on. Sometimes it can be much harder to stand up for yourself.

I ran (as well as I could) out of the salon and sat outside the Wal-Mart crying. I called my husband to come pick me up and quickly got on Facebook on my phone. I had joined a private support group for psoriatic arthritis on Facebook that boasts over 11,500 members worldwide. I knew I could rely on them to receive swift support and words of experience and wisdom. I could never have predicted what was to follow.

Within minutes, I got messages asking for specifics about the experience, where I was and what exactly happened. Within an hour, I had received a phone call from the district manager of the salon confirming details, reassuring me that training for awareness were planned for the next day in all their salons because of this and that the employee had been relieved for the day and a meeting with her was scheduled with her direct supervisor, himself, and his supervisor the day after that.

I was so gratified that people who understood my struggle but were literally on the other side of the world took the effort to start making phone calls to the agency to demand they rectify the situation. They had to stop answering the phone and unplug it because of the deluge of calls they were getting from all over the world.

In the next hour, I received a call from a news outlet who had received calls from my PsA army. They scheduled an interview for the next day. While I was reluctant to be on TV, and eventually YouTube and everywhere, because of my disability, March was Autoimmune Awareness Month, and I felt I had a responsibility to be an advocate and share my story to educate others. I hope my experience helped someone.

I hope a hairdresser saw my story and took it upon themselves to research skin disorders. I hope someone with a disability saw my story and learned that no matter who you are there are people out there who will help you if you need it. I hope someone saw my story and realized that although they don’t have a disability, they can come to the defense to a friend who does, and through their actions, they can make a difference. They can matter.

I guess it’s time I face getting a haircut again. Just to be safe I’ll go to a different salon.

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To Those Who Are Quick to Judge People With Psoriasis

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I’m not making this post for likes, for sympathy, or for any reason to benefit myself personally.

I ache, burn, itch and am in pain. I cry, complain and have asked myself “Why me?” more times than I can count. While I can argue I have justification for all of these actions, in hindsight, I realize none of this is fair to myself or anyone around me.

I want compassion, understanding, acceptance and awareness, not only for myself, but for anyone who is living with a skin condition that brings a negative stigma.

I’m not dirty. I’m not gross. I’m not infected nor am I contagious. I do have an autoimmune disorder known as psoriasis.

Psoriasis is an autoimmune disorder which affects the skin with dry, red, scaley patches. Psoriasis is not contagious. There is no cure and it is chronic. Even though I could go months or years with clear skin, I’ll carry this gene for the rest of my life.

A little background on my condition:

I had my first flare-up when I was 19 years old. It came with no warning. I was in my second year at university when I woke up one morning covered in burning/itchy/bright red spots that covered my face, down every body part to my feet. Having no idea what was going on, I called my parents who couldn’t offer any solid solution aside from making a doctor’s appointment.

After consulting with three different general practitioners who “diagnosed” me with scabies, chickenpox, and various fungal infections, this led to prescribing me too many antibiotics to count, all proving no solution. I was depressed, stressed and my nerves were shot.

My self-esteem and self-worth were at an all-time low. Eventually this affected my work ethic towards school and studying. I quit going to class, and my grades sunk to the point that I dropped out for two semesters. Going out in public had become a living nightmare.

After about a year and not having any success towards a solution, my friend suggested I seek out a dermatologist. I made the initial consultation appointment and as soon as I sat down in the office, the doctor’s first words were “You have psoriasis.” Just the confidence in his tone was enough to bring a moment of relief. I was in and out within 15 minutes with information and a promising prescription for prednisone, which is a powerful steroid.

Ask questions and educate yourself on any medications you’re given! 

I took prednisone for about two weeks with overwhelming results. I was 100 percent clear! I had never felt better. I felt like I had my life back. This lasted a little under a week. My body went into withdrawal and rebounded from the prednisone and my once-itchy red spots came back 10 times worse as half-dollar-sized plaque spots covering my scalp, hands, stomach, groin, ears, arms, back, legs and feet. I couldn’t eat, sleep or shower without hurting and without my skin cracking and starting to bleed to the point I would cry myself to exhaustion to fall asleep.

I was afraid to go back to the dermatologist. I took the initiative to researching, educating and attempting self-treatment. The latter was a failure. If there was a home remedy or something over-the-counter, I’ve tried it with no success or worsening my psoriasis.

After wearing myself out, I gave in and sought out a different dermatologist who prescribed me a medicine called methotrexate and a few topical creams. I was only taking this a little over a year, safely, when my dermatologist suggested I try going on a biologic. Long story short, I was on three different biologics which failed, showing no success after six months of treatment on each.

It’s been six years of bouncing around on different medications, looking for anything to help. Of those six years, I’ve spent about three years with 90 to 100 percent clear skin. The last medication I was on was Otezla, which my body grew resistant to after about five months. Because I was having a major flare up, I was prescribed Cyclosporine and I have just started my first doses of another biologic (which I swore off) called Stelara. A few days in and I’m seeing huge improvement already.

I must remain hopeful. That’s all I have.

If you’re still with me, I want to thank you for taking the time to read a small part of my story.

I am a son, brother, fiancé, uncle and friend. I am a person. I refuse to let my psoriasis define me. I want to shatter the negative stigma of skin conditions. There’s nothing wrong with me. My skin just sheds a little faster than normal.

I want to go outside without feeling the stares of people who pass me by. I want to eliminate any timidness of people who are quick to judge and not so quick to shake my hand or look disgusted when I hand them my debit card to pay for an item. I want to feel like a normal person. I want to wear shorts in the summer heat without judgement.

Even though I’ve callused my bubble of confidence, there are days that are very difficult. There are days I still ask “Why me?” But I can’t let my psoriasis win. I am strong. I have a great support system that many may not have.

So next time you see someone who looks different than you, stop yourself and put yourself in their shoes. Silently applaud them for having the strength to get out and live their life. Smile. It makes a huge difference. Living with a skin condition that affects your appearance can be a struggle.

Get educated. Show respect. Show compassion. Express acceptance. Promote awareness.

We’re all people trying to live.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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To the Psoriasis I’ve Lived With for the Last 28 Years

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Dear psoriasis,

Hate you. Sorry, not sorry. I thought we had a good thing going. I spent the last 28 years primarily ignoring you, and you me. Sometimes, I might have complained about you to the few people outside of my family who knew about you and occasionally visited a few doctors to try and make you leave. But mostly, I just went through my life hiding you when I had to, with you coming and going as you pleased.

And that seemed to work out pretty OK for us both. I never charged you rent, and you always had a place to live with lots of yummy scalp food to chew on. Up until quite recently, I could cover you with my thick hair or layers of concealer, and you would throw obnoxious, but relatively short-lived hissy fits before going on your merry way.

That said, I don’t appreciate your emergence on my face, since this wasn’t part of our rental agreement. The polka dots speckling my eyebrows and the somewhat pimply breakout of psoriasis on my chin and neck aren’t welcome.

Thanks for trying to hide in the freckles, though. Whoot, I love looking like I’m 13 again. But not even inflaming my face was enough. Nope, now you’re causing constant pain. From swollen, purple joints in my fingers to popping and cracking joints whenever I make even the smallest of movements to hips that just won’t stay in place, my body is teeming with you. And now you have destroyed my back! The pain robs me of my sleep, confines me to just a few pairs of shoes to alleviate the back pain, steals all the hard-earned flexibility in my legs and turns my strong core into a sad and weak mess.

Thanks to you, I am completely overrun with psoriatic arthritis, just one more exciting addition to the psoriasis of the last 28 years.

Here’s looking at you, jerk. With at least one referral pending from my neurologist and pain management injections on the horizon, I want to thank you for hammering one more nail into my coffin. And even though this chronic condition is much less insidious and much more controllable, I’m tired of constantly having to battle for health. I deserve a real shot, and I will have my life back. You might have taken one round, but I’m going to win this war.

Psoriatic arthritis, you can screw off. Your lease is up.

With love,

The Girl Who Kicked Your Butt

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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