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Monday, March 6, 2017 9:25 am EST

The Sound of Silence

One Woman’s Atopic Dermatitis Journey from Education to Empowerment

When Holly was in her early thirties, she developed a painful, itchy rash that kept spreading. Eventually, at the age of 35, she was diagnosed with moderate-to-severe atopic dermatitis. People living with atopic dermatitis can experience ongoing physical symptoms that can be a constant frustration during the day and can keep them up at night, impacting their lives physically, socially, psychologically and even professionally. Holly shares her story with the hope that it empowers others to stop living in silence and to start advocating for the help they need.



In Her Own Words: Holly’s Story

Atopic dermatitis may stop me from doing a lot of things in life, but it shouldn’t stop anyone from sharing their story and finding support. Atopic dermatitis is not just a minor skin irritation. It never goes away. My arms are constantly red, and I have a bumpy rash all over my legs that looks – and feels – like I’m covered in bug bites. It constantly looks like I just returned from a camping trip. The irony is that my atopic dermatitis prevents me from doing most of my favorite outdoor activities, like hiking, because it’s just too uncomfortable and painful.

Unfortunately, I’ve spent a lot of my life thinking about the things I can’t do because of atopic dermatitis. It’s not just outdoor activities that I miss out on – the constant, unbearable itch and physical pain associated with atopic dermatitis affects every part of my life, from waking up throughout the night, which leaves me tired all day, to meeting new people because I worry what they think about my skin.

People without atopic dermatitis don’t seem to understand what I’m going through, and it’s hard to explain my disease to others.

"It can be sad and lonely, but sometimes I don’t want people to touch me or give me a hug because it’s too painful on my skin. Even a touch as small as my dog sitting on my lap can feel like glass is cutting into my skin.”

I feel like my atopic dermatitis prevents me from doing so many everyday things – things most people probably don’t even give a second thought. One day I made a wish list of all the things that I want to do, but can’t because of my atopic dermatitis.

  • I wish I could get a full night of sleep without waking up with hot, itchy skin and bloodied sheets.
  • I wish I could wear rings, perfume or a watch, and look like the fashionable person I see in myself.
  • I wish I didn’t have to worry about getting so distracted in meetings at work because the itch is relentless.
  • I’ve had atopic dermatitis for so long that my kids probably don’t remember what I look like without it. I wish they could.

I hope that eventually I’ll be able to get my disease under control and do these things instead of just wishing about them.

It has been challenging to find a doctor who was the right fit for me – someone who cared about atopic dermatitis. I tried five or six different doctors (my family doctor and multiple dermatologists) before finding my current doctor. I just didn’t feel like they were the right match for what I needed: someone who deeply understood how the disease impacts every part of my life, not just my skin.

Thankfully, my current dermatologist is a great fit. He listens to me and understands how life-altering the disease is for me. He looks beyond my skin and asks about how I’m feeling, my sleep and my mood. He also provides suggestions for my everyday life: clothes that won’t be as irritating to my skin, new shampoos for my itchy scalp and recommendations on things to avoid, like fragranced soaps, lotions, perfumes and spicy foods. It’s reassuring to hear him say that researchers and doctors are learning more about atopic dermatitis every day. Everyone is different when it comes to the type of bedside manner that appeals to them, but for me, it’s a relief to have a doctor who asks me about all aspects of the disease, not just the physical impact.

What I want is for people – not just doctors and patients – to start talking about atopic dermatitis. Beyond the physical pain, not being able to openly share my experience with other people has been extremely isolating. Sometimes I felt like I was the only one suffering from it. Eventually I found a community of people with atopic dermatitis, and we talk openly about our experiences. It has been so helpful for me, and I want others with atopic dermatitis to have access to the same support.

Holly’s story is one voice among many who suffer from atopic dermatitis. Her story is part of our UnderstandAD campaign to raise awareness about this challenging skin disease. To learn more about UnderstandAD visit: https://www.understandad.com/.

 

Last Updated: 3/6/2017
US-ILF-13816 | US.DUP.17.01.185
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Atopic Dermatitis: From Education to Empowerment

Understand AD is a national awareness campaign focused on educating people about moderate-to-severe atopic dermatitis (AD), a chronic form of eczema that can be serious. By educating Americans about the physical and quality of life impact of atopic dermatitis, Understand AD will give a voice to and empower the people living with the disease.

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