“Disclosure: This post is a part of a paid program by Sanofi Genzyme and Regeneron Pharmaceuticals, Inc. as part of a paid program. All opinions are my own.”
There has been a lot of talk lately on social media about people with “invisible” diseases. I have seen conversation online from folks with diseases such as lupus, rheumatoid arthritis or fibromyalgia who say that they feel that they are at a disadvantage because people cannot see their illness and often doubt that they are “really sick.” I 100% understand where they are coming from, and can’t help but think back to my college friend named Chris who suffers from atopic dermatitis. Unlike those “invisible” diseases I mentioned, atopic dermatitis can be very, very visible. For Chris, his disease even shows up on his face.
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
Chris has struggled with the reactions he received from others when they see his flare-ups. It has been emotionally hard for him. Most people have no idea what atopic dermatitis is, and I remember in college, people kept their distance from him, in fear of his disease being “contagious.” So you know, my friend is a really handsome guy and one of the nicest people I’ve ever met, so in college, it was really hard to see so many people avoid him because of his atopic dermatitis.
After seeing Chris’ struggles with people’s ignorance on atopic dermatitis firsthand, I’m happy to learn about Understand AD, 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. I’m happy to know that there is a resource for people to learn about the disease and hear from others who have atopic dermatitis. Based on Chris’ experience, I can’t help but imagine that there are other great people who are struggling with atopic dermatitis and sitting home right now because they are self-conscious and uncomfortable with how they look and feel. If more people understood exactly what this disease entailed, perhaps those suffering from it wouldn’t feel embarrassed and alone. The campaign is a Sanofi Genzyme and Regeneron program in collaboration with the National Eczema Association and the Dermatology Nurses’ Association.
To help quantify the physical, psychological, social and professional impact on American adults living with the disease, Understand AD just released new survey data. 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
Although people suffering from atopic dermatitis may feel alone, there may be others going through the same experience. An estimated 1.6 million adults in the United States are living with uncontrolled moderate-to-severe atopic dermatitis.6
I was also excited to learn that Understand AD features celebrity chef Elizabeth Falkner (Food Network, Bravo’s Top Chef) as 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.
Whether you suffer from atopic dermatitis or know someone who does, I encourage you to visit www.UnderstandAD.com to learn more about Elizabeth’s experience, hear from other people living with the disease, learn more about moderate-to-severe atopic dermatitis and get connected with advocates such as the National Eczema Association and Dermatology Nurses’ Association. You can learn more about Elizabeth’s journey with atopic dermatitis by watching the following video:
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, Wisconsin Mommy Media, LLC disclosure.
1 http://www.mountsinai.org/patient-care/health-library/diseases-and-conditions/atopic-dermatitis#risk Accessed: September 21, 2016.
2 National Institutes of Health (NIH). Handout on Health: Atopic Dermatitis (A type of eczema) May 2013. Available online: http://www.niams.nih.gov/Health_Info/Atopic_Dermatitis/default.asp. Accessed:September 21, 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 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
6 Adelphi Final Report, data on file
US-ILF-13555 | US.DUP.16.10.046