My Life with Atopic Dermatitis

“Disclosure: This is a sponsored post by Sanofi Genzyme and Regeneron Pharmaceuticals, Inc. as part of a paid program. All opinions are my own.”

As I’ve grown older, I’ve noticed that health is a more frequent topic of conversation with my mother and uncle, and honestly, some health topics are ones that I never thought would affect my family and me. Personally, I expected to have to deal with issues such as aging, heart disease and potentially even dementia as my mother and uncle aged. However, I never expected to have to deal with atopic dermatitis. But sadly, atopic dermatitis is one of the diseases that both my mother and I live with.

Atopic dermatitis is a chronic form of eczema¹ that is characterized by unpredictable flare-ups triggered in part by a malfunction in the immune system.^2,3,4,5 Symptoms can include red rashes, intense itch, dryness, cracking, crusting and oozing of the skin, and they can occur on any part of the body.¹ Sounds really lovely right? My ma (as I call her) had some cracking and crusting on her skin and would feel very uncomfortable. While the disease impacted my ma physically, I know she also felt self-conscious and embarrassed about her appearance. She also experiences flare-ups on her face, and when this happens, she refuses to leave the house because she is so self-conscious of how she looks, and what people may think of her.

I try to laugh and make jokes about atopic dermatitis simply because that is who I am and it’s my coping mechanism, but this is a serious issue. Personally, I feel as if people look at my ma and me differently when they see our skin. Usually, the first thing people may assume is that I’m contagious. I wish I could just explain to them about my disease, and that it’s not contagious. It is bad for my ma because when she has a flare-up on her face, she refuses to go outside. She uses her flare-ups as an excuse to do nothing. Even more so, this disease not only takes a toll on me physically, but also emotionally. When I have a flare-up, I ask myself if I should just not leave my home because I’m afraid someone might see my skin. I’m even afraid to go on dates because I don’t know how I can explain my disease to someone on a first date.

There are many nights where I can’t get a good night of sleep because I’m woken up from my constant itching. Some days it’s as bad as only getting three hours of sleep after two nights. Often times, I’m left so tired and groggy the next morning, I have to depend on others in my family to care for my children. On these days, I’m not able to work because I’m certain to make mistakes. For example, one time I was so tired that I accidentally sent paychecks out to my employees with the wrong amounts, which was frustrating and upsetting for them. But this was just a small mistake compared to other mistakes due to lack of sleep. Sadly, there have been larger mistakes. There was one time that I was so tired (because I hadn’t been able to get a solid night of sleep for days) that I got into a bad accident that totaled my car. Luckily, I was the only one in the car and no one else was hurt when I hit a tree, but that day taught me never to drive if I hadn’t been able to sleep the night before due to constant itching.

And this isn’t a tiny little itch! The itch can become so unbearable that I can’t even handle it at times. Imagine scratching and itching so bad that you can’t even type a full sentence out. In fact, I’ve had to stop so many times to scratch while writing this article that I lost count. Writing a simple blog post that should only take a few minutes can end up taking an hour when I have to stop and scratch. Believe me when I say that I have tried to ignore it but that only makes it worse. There just isn’t any relief. It truly is very frustrating.

But what I have learned is that dealing with atopic dermatitis, and keeping it from disrupting my life, starts with understanding it. That’s where Understand AD comes in as a way to change the conversation on atopic dermatitis. 

Understand AD is a national campaign focused on educating people about moderate-to-severe atopic dermatitis and raising awareness about the physical and quality of life impact of the disease. The campaign is a Sanofi Genzyme and Regeneron program in collaboration with the National Eczema Association and the Dermatology Nurses’ Association. Celebrity chef Elizabeth Falkner (Food Network, Bravo’s Top Chef) is the spokesperson for the campaign. She has lived with the disease for more than 20 years. Elizabeth joined the Understand AD campaign because she wants to share her experience of living with moderate-to-severe atopic dermatitis in order to help people understand what a life-impacting disease it can be. Atopic dermatitis has impacted so many parts of her life, and she wants to help create a community for people who may feel isolated and alone.

 

Understand AD also just released new survey data to help quantify the physical, psychological, social and professional impact on American adults living with the disease. The survey asked 505 U.S. adults (18 years of age and older) who self-reported being diagnosed with moderate-to-severe atopic dermatitis a series of questions about their experience with the disease. The survey findings showed moderate-to-severe atopic dermatitis may affect not only patients’ skin, but multiple aspects of their lives. Key findings include:

• 53 percent of people living with moderate-to-severe atopic dermatitis reported that their disease has negatively impacted their daily lives
• 82 percent have made lifestyle modifications, such as avoiding social engagements, being in pictures and participating in sports/exercise
• 55 percent reported that their confidence was negatively impacted due to their disease
• 49 percent say their sleep has been negatively impacted by the disease, moderately or significantly
• 23 percent of people feel depressed and 28 percent feel anxious due to their AD
• 20 percent report that their AD has impacted their ability to maintain employment and 16 percent have made career choices that limit face-to-face interactions with others because of the disease

 

While these results aren’t surprising to me, since I have atopic dermatitis, it is always helpful to know that my ma and I aren’t the only ones living with this disease and that more information is being shared about how it impacts people.

Visit www.UnderstandAD.com to learn more about moderate-to-severe atopic dermatitis and the survey findings, and to hear from other people living with the disease.

I received compensation to write this post. Regardless, all opinions expressed are still 100% my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255 Guides Concerning the Use of Endorsements and Testimonials in Advertising, Rita Hernandez Disclosure.

¹ https://www.mountsinai.org/health-library/diseases-conditions/atopic-dermatitis#risk Accessed: September 22, 2016.

² National Institutes of Health (NIH). Handout on Health: Atopic Dermatitis (A type of eczema) May 2013. Available online: https://www.niams.nih.gov/health-topics/atopic-dermatitis. Accessed: September 22, 2016.

³ Gittler JK, et al. Progressive activation of TH2/TH22 cytokines and selective epidermal proteins characterizes acute and chronic atopic dermatitis. J Allergy Clin Immunol. 2012; 130:6. 1345-1354.

⁴ Leung DYM, Boguniewicz M, Howell MD, Nomura I, Hamid QA. New insights into atopic dermatitis. J Clin Invest. 2004;113:651-657.

⁵ Lebwohl MG, Del Rosso JQ, Abramovits W, et al. Pathways to managing atopic dermatitis: consensus from the experts. J Clin Aesthet Dermatol. 2013;6(7 Suppl):S2-S18

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