A new initiative has launched that sheds light on the physical and psychological impacts of chronic skin diseases on teens and young adults. It is called the Understand AD Squad, and it hopes to raise awareness and empower teens living with atopic dermatitis.
As most of our writers at Affinity will agree, life as a teenager is filled with challenges. Throwing a chronic disease in the mix, especially one that is visible, makes being a teen that much harder.
Isaiah is 17 years old and living with atopic dermatitis. He’s had the condition since he was only two, and feels like it affects all aspects of his life. Isaiah has been able to find activities that he enjoys, like music and playing chess, but he is restricted from others, such as sports, because sweat triggers his atopic dermatitis.
Atopic dermatitis, AD for short, is a severe form of eczema, characterized by symptoms of intense itch and rashes that cover much of the body. Teens tend to have more of a moderate-to-severe condition, where atopic dermatitis becomes thickened and lichenified. Like in Isaiah’s case, atopic dermatitis often sets in before the age of five and can persist into adolescence and beyond.
Moderate-to-severe AD afflicts approximately 400,000 teens in the United States, and this recent study suggests 39 percent of them have experienced bullying because of their AD. The study, published in the Journal of Allergy and Clinical Immunology, found that 46 percent of teens with AD believed their schoolwork was affected by their condition, 52 percent reported feeling depressed during a flare-up, and 50 percent indicated they’ve been concerned about being seen in public because of the state of their skin.
It’s pretty clear that having a chronic skin disease has a psychological component in addition to the physical, and Isaiah attests to this. Isaiah is the subject of a new video series documenting his experience as he gains valuable insight from a team of experts on managing his skin condition through adulthood. This new initiative, the Understand AD Squad, highlights Isaiah’s journey with the help of experts Dr. Mercedes E. Gonzalez, a pediatric dermatologist, and Christine Triano, a licensed social worker and psychotherapist.
Dr. Mercedes Gonzalez is a Clinical Assistant Professor of Dermatology at the Florida International University Herbert Wertheim College of Medicine as well as a faculty advisor for the dermatology interest group at the University of Miami Miller School of Medicine. She joined the Understand AD Squad to give teens a chance to talk candidly with a dermatologist and provide patients and their families with important advice about AD management.
Christine Triano specializes in the treatment of adolescents, adults, families and creative professions. She strives to help clients make new discoveries about themselves and identify ways to overcome the obstacles they face—which is why she joined the Understand AD Squad. By encouraging patients with chronic diseases to open up about their personal experiences, Christine can help them realize their condition does not define them.
In an interview, Dr. Mercedes Gonzalez and Christine Triano weigh in on advice for teens living with visible chronic skin diseases and addressing stigma surrounding these conditions, while Isaiah discusses his personal experience with his condition and his hopes as the subject of the Understand AD Squad initiative.
Interview responses have been edited for clarity.
Affinity: If Isaiah is being treated, how so? How has his treatment benefited and/or challenged him?
Gonzalez: There are two components of treating atopic dermatitis: the maintenance of dry skin care, which consists of gentle cleansing and frequent moisturizing, and the treatment of flare-ups.
Isaiah has worked with a pediatric dermatologist who has treated him with what most patients with atopic dermatitis are treated with, which is, first and foremost, a skincare routine for dry skin. He receives counseling on the use of gentle cleansers and moisturizers.
For flare-ups of atopic dermatitis, there are a number of treatment options available, and that’s something that, over the years, has changed for Isaiah. It’s something that should be discussed on a case-by-case basis– each patient should have a treatment plan with their own dermatologist.
Affinity: How does Isaiah’s experience with atopic dermatitis compare to that of other teens with chronic skin diseases that you treat?
Gonzalez: Isaiah is probably one of the most severe cases of atopic dermatitis that I’ve seen. Atopic dermatitis is a spectrum – all the way from mild, background dryness to very severe, where most of the body surfaces are involved with the disease. Isaiah is on the very severe end of the spectrum.
Affinity: How does the Understand AD Squad address stigma around visible skin diseases?
Gonzalez: The Understand AD Squad brings it to life. It demonstrates that kids are made fun of because of their skin, and eczema specifically. The series also demonstrates how to deal with that and turn that into a positive story.
Affinity: How does Isaiah’s experience compare to that of other clients you’ve seen with chronic illness?
Triano: There are a lot of similarities and, of course, some differences, as everyone has their own story and path. What Isaiah does have in common with other people I work with is that he has experienced that social isolation, been bullied and had to miss a lot of school and deal with the impact of that.
He has missed out on other things that he’d like to do, too, like playing baseball. There are so many extracurricular activities and sports that contribute to the full adolescent experience and help with making friends. It’s very common to miss out on those things when you’re living with a chronic illness because, just the basics—like keeping up with homework, getting enough rest and taking care of your condition—can be very overwhelming.
Isaiah is a unique kid, too, because he is so hopeful and he has such amazing family support – they have such a great communication system and his parents are so devoted to helping him start to take over some of his care responsibilities. I don’t always see that.
Affinity: What advice would you give to teens and young adults who are living with chronic skin diseases?
Triano: I would say a few things, and this is what I shared with Isaiah –
1. Learning how to take care of yourself and becoming more independent and autonomous with your care is really important.
As a little kid, you’re getting dragged along to the doctor’s and being told what to do, how and when. So, as a teen, starting to take some ownership of your condition, acknowledging that you’re living with a chronic disease, but knowing that you do have some control over how you care for yourself, and that can affect the outcome, as well as how you feel and what you are able to do.
2. Another is to build your support team. As we discuss in the campaign, it’s important to build and know your Squad. Figure out your resources, trusted medical experts, supportive friends and what family you can turn to, as well as ways to connect with other young people living with a similar disease or condition.
Isaiah spoke about being involved in the National Eczema Association’s conference and how significant that was for him because he was around other kids who were experiencing something similar. It felt kind of normalized for him and showed him that he isn’t alone, it isn’t just him. Finding that community is super important.
3. Don’t be afraid to ask for help. If you start to feel really low, depressed, hopeless or start to have thoughts of self-harm, seek help! Reach out to a therapist, counsellor or let your family know – it’s really important to ask for help when things start to feel really overwhelming.
Affinity: What impact do you think the Understand AD Squad will have? What are your hopes/goals for the video series?
Triano: AD is really misunderstood, and there is not a lot of awareness of what it’s like to live with a disease like atopic dermatitis. There’s still a lot of confusion around the differences between eczema and psoriasis – it’s not well-understood how serious AD can be and what it means to grow up with that disease.
I really hope the Understand AD Squad creates public awareness, but also helps young people living with this disease know that they’re not alone – understanding that there is a community and a template for building their own Squad, and get the help and support they need. I hope they understand that this disease does not have to define them, that is just a part of their quilt and there are so many other patches that can be added to define who they are and what they’re about.
Affinity: Could you talk about managing your AD broadly from a treatment point of view?
Isaiah: I’m not going to go into specific things that I did, but what I can tell you is that having to go to school with my creams and stuff can be very embarrassing. After I do all of that stuff, my arms can be greasy and look shiny, and people ask me, “why are you so shiny?” When I’m writing on paper, it gets greasy. So, that’s just a hassle for me. It has been hard for me – both at school and at home.
Affinity: Do you have any advice for other teens facing similar struggles?
Isaiah: First thing, don’t give up hope because the research and treatment options are expanding as the years go by. You may not totally be free from the grasp of AD, but new research and medications are coming out year by year, which will make life more manageable and easier for me and other patients with AD. Also, build your own team of experts like I did with the UAD Squad. Find a mentor, therapist and dermatologist who, in the end game, will work together to help you manage your AD.
Affinity: Do you think there are barriers that would keep a teen with a chronic skin condition from seeking treatment from a dermatologist? Can you explain a little bit about what you did with Dr. Gonzalez and how that helped you transition into managing your own care?
Isaiah: Well, if you want to talk to a dermatologist, you first have to want to seek help and that takes some humility. When I was talking to Dr. Gonzalez, I felt very open and felt like I could tell her my struggles and what I couldn’t do and what I wanted to do. Talking to her helped me to understand the science behind AD, it really helped me to see AD in a whole new light, so that I can work with her to come up with more ways to navigate my AD as I start to become more independent in caring for my disease.
Isaiah hopes that the Understand AD Squad will inform those who may not know about AD, help teens realize they’re not alone, and “bring hope to the hopeless.” After watching much of the video series, I have a feeling it will do just that.
Check out the Understand AD Squad series here.
Featured image via Understand AD.
