Lillian Finklea has been living with atopic dermatitis (AD) since she was born, a disease that both her parents, Lindsey and Patrick, were already familiar with.
“The irony for us is that we are a pediatrician and a dermatologist with a child that suffers from something that we both treat,” Lindsey said. “But we can’t always seem to navigate it as well as we’d like to. There are always the good days and the bad days unfortunately.”
Now 11 years old, Lillian and her parents have learned a lot about her atopic dermatitis, from coping with the physical symptoms to navigating the psychosocial impact.
“Having atopic dermatitis is very hard,” Lillian said. “I’ve had it since I was born, it’s hard to do sports. It’s a longer morning or night routine, and I am sometimes limited to what I can do, especially for outdoor activities.”
Moderate-to-severe atopic dermatitis is a chronic inflammatory disease with symptoms often appearing as a rash on the skin . Symptoms can include intense, persistent itching and skin dryness, cracking, redness, crusting and oozing.
“Atopic dermatitis is a burden,” Lindsey said. “The quality of life that comes with this disease is one of the worst among dermatological diseases, and partially because these children and adults tend to have itching that is out of proportion to what the world can sometimes see.”
For children especially, inadequately controlled atopic dermatitis can have a significant impact on their quality of life, and can also place significant stress on their families.
“When I was younger, my atopic dermatitis was terrible. I would scream and cry because it was itchy. I had it basically all over my body, it was everywhere,” Lillian said. “Sometimes I would flare up to the point where I physically could not move my arm at all.”
Inadequately controlled atopic dermatitis can also have a physical, emotional and psychosocial impact, causing sleep disturbance due to itch, anxiety and depression, and feelings of isolation.
“Sleep is a huge factor that is affected by atopic dermatitis and lack of sleep affects every aspect of your life,” Patrick said. “And then of course, it affects the caregiver’s sleep too, because we take turns getting up.”
“I would tell the kids who have atopic dermatitis that they are definitely going to have to go through some struggles, but they are still going to live a normal life, or live an awesome life,” said Lillian. And they’re going to be successful, and they’re going to make it through. Even if someone tries to stop them in the middle, they’ve got to keep going.”
- https://www.aaaai.org/conditions-and-treatments/conditions-dictionary/atopic-dermatitis-(eczema). Accessed September 2019.
- Mount Sinai. Patient Care Atopic Dermatitis 2016. http://www.mountsinai.org/patient-care/health-library/diseases-and-conditions/atopic-dermatitis#risk. Accessed Sept. 9th, 2019.
- S. Weidinger and N. Novak, Atopic dermatitis. Lancet. 2016;387:1109–1122ivT.
- Zuberbier, S. Orlow and A. Paller, Patient perspectives on the management of atopic dermatitis, J Allergy Clin Immunol, 2006;118(1):226-232.