A day at school for 14-year-old Malena has different challenges than those faced by her peers. Malena, who lives in Buenos Aires, Argentina, has severe atopic dermatitis (AD), a chronic type 2 inflammatory skin disease. People living with moderate-to-severe AD have an overactive immune system, which results in signs and symptoms which may include intense, persistent itch, dryness, cracking, redness, crusting and oozing.
Inadequately controlled atopic dermatitis can have a physical, emotional and psychosocial impact, and has been associated with sleep disturbance due to itch, anxiety and depression, and feelings of isolation. For adolescents, the physical and emotional effects of moderate-to-severe AD can be particularly disruptive during their critical years of development, preventing them from participating in school, sports and social activities.
“My school life is a bit complicated; having atopic dermatitis means that my skin itches and I can only focus on the itch,” Malena said. “I have to study, but I can’t, because I can’t stop scratching.”
Malena has also faced social challenges because of her severe AD, such as bullying and isolation. In elementary school, her classmates thought her AD was contagious and they wouldn’t let her play with them. Now in high school, Malena’s severe atopic dermatitis prevents her from participating in typical school activities, like gym class.
“I can’t go to gym class, because when I sweat my skin starts getting irritated and then I feel sore all over”, she said.
The full impact of moderate-to-severe AD is felt by the whole family, in particular parents or caregivers.
“The reality is that I’m worried about everything. I’m worried when I see her hurt and hear her scratching herself at night and she doesn’t sleep,” said Gaby, Malena’s mother. “I’m worried because we’re still searching for something to improve her quality of life.”
For Malena, the hardest part is the reaction of others. “The people who don’t know what I have get scared and want to be far from me,” said Malena. Despite her severe AD, however, Malena remains determined to live her life her way. “I don’t put off anything due to my atopic dermatitis because it’s part of me. My advice to someone with atopic dermatitis: what matters is what you think of yourself and what you want to be.”
Malena’s Story: Living with Severe Atopic Dermatitis
‘Agents of Change’ AD Challenge
We are committed to supporting the AD community by raising awareness and empowering people to take action.
As part of this commitment, in partnership with Regeneron, we have launched the ‘Agents of Change’ AD Challenge, a new, global grants initiative seeking proposals for grassroots solutions to help solve some of the greatest emotional and social challenges impacting those living with this chronic skin disease.
In its inaugural year, the ‘Agents of Change’ AD Challenge focused on helping address the unacceptable and sometimes overlooked bullying or judgment experienced by adults and adolescents living with AD.
Selected proposals ranged in approach from using art and creativity to shed a light on the emotional and psychosocial burden of AD, to training young people with AD to become anti-bullying ambassadors in local schools. Learn more about the 2019 'Agents of Change' AD Challenge grant recipients here.
DER.20.08.0012 - Date of Approval: September 2020