Connection, Community, Communication: One Person’s Journey to Build a Network to Support Herself and Other Atopic Dermatitis Patients
Posted: October 29, 2021 | Word Count: 783
Sponsored by Incyte Corporation
Living with eczema can be frustrating, painful, and, at times, a source of some tough days. Just ask Linette Roungchun, who has been living with atopic dermatitis (AD), the most common form of eczema, since she was three years old.
“When you have eczema, your condition impacts every single aspect of your life whether you realize it or not,” says Linette. “The worst thing is that you can’t just ignore it and pretend it doesn’t bother you.”
AD is often thought of as dry, irritated skin, or a rash. And it is simply that for some. But, what many people don’t realize is that AD can have a much deeper impact on some who suffer from this common skin condition. AD affects more than 21 million people in the United States ages 12 and older1 and is characterized by irritated and itchy skin that can cause bumpy lesions that may ooze and crust.2 The majority of people with AD report a cycle of itch and trying different management options with limited relief that can take a toll both mentally and physically.3
“The itch is a constant distraction. All through the day I am surreptitiously scratching behind my desk or out of frame on a web conference,” says Linette. “And guaranteed once I get home and am able to remove my work attire, I’ll have an itch attack, and then another at night during sleep.”
The itch associated with AD can also have a profound effect on a person’s relationships, social life and mental health. In fact, according to a survey of more than 600 adults living with AD, 39% reported avoiding social interaction, one in four rated their health as “fair” to “poor” and more than 16% reported they are “very” or “somewhat dissatisfied with life.”4 This impact on daily activities can be extremely isolating for some, but the good news is that help is available for those who want it.
In 2019, Linette began to share her journey with AD on social media after being inspired by others speaking out about their experience with the condition. Since then, she has thrown herself head first into the AD online community, speaking with people living with AD, leading meetups and supporting advocacy groups.
“When I first started looking for support from the online community, about 15-20 years ago, there were limited resources available that weren’t that helpful to me. But now, there are so many different social media platforms where one can readily find support,” Linette said. “The eczema community means everything to me. I’ve looked for this kind of love and support since I was a child, and am now so grateful that I am making these real connections.”
Through her community involvement, Linette has tried to positively impact the lives of those living with AD by providing an avenue for conversation, and reassuring others they aren’t alone in their journey. Through sharing her story online and partnerships with advocacy organizations, including the National Eczema Association, and the Allergy and Asthma Network, she’s been able to gather a global support network within the AD community.
Another key relationship in building a community is ensuring a strong, trusted relationship with a dermatologist. When living with a chronic, inflammatory condition like AD, it’s important to establish recurrent visits with a dermatologist who can help create individualized management plans.
“My journey with eczema has taught me that though my condition can be so unforgiving at times, my skin is a warning that something is off-kilter. I’ve learned a lot from this condition — mainly how to be incredibly loving and empathetic while still looking out for myself.”
Connecting with others in the AD community can make you feel less alone and may lead to an increased understanding about living with AD. Visit Startfromscratch.com to access resources and learn more about AD.
REFERENCES: 1. Silverberg JI, Gelfand JM, Margolis DJ, et al. Atopic dermatitis in US adults: from population to health care utilization. J Allergy Clin Immunol Pract. 2019;7(5):1524-1532. 2. Boguniewicz M, Fonacier L, Guttman-Yassky E, et al. Atopic dermatitis yardstick: practical recommendations for an evolving therapeutic landscape. J. Ann Allergy Asthma Immunol. 2018;120(1):10-22. 3. More Than Skin Deep. Understanding the lived experience of eczema. http://www.morethanskindeep-eczema.org/uploads/1/2/5/3/125377765/mtsd_report_-_digital_file_1.pdf. Published March 2020. Accessed October 5, 2021. 4. Silverberg JI, Gelfand JM, Margolis DJ, et al. Patient burden and quality of life in atopic dermatitis in US adults: a population-based cross-sectional study. Ann Allergy Asthma Immunol. 2018;121(3):340-347.