Atopic Dermatitis: Mitigating Impact on Quality of Life

April 20, 2020

Given the impact that atopic dermatitis can have on quality of life, Erika Czopkiewicz, caregiver, reviews the lifestyle changes that she and her son have implemented to mitigate disease-related challenges.

Given the impact that atopic dermatitis can have on quality of life, Erika Czopkiewicz, caregiver, reviews the lifestyle changes that she and her son have implemented to mitigate disease-related challenges.

Transcript

Erika Czopkiewicz: Quality of life for us was pretty poor for many years. It has gotten better over the last couple of years, but overall, we had a very poor quality of life. We were not able to do anything, and at one point in time, my son would just lay in bed and refuse to get up. He was so itchy. He was miserable. He didn’t want to do anything. To get him to school was a huge feat. Once we did that and he came home, that was it. He would just lay in bed. He would watch TV or he would play video games.

For me, there were sleepless nights, as well as for him. The sleepless nights were a huge factor. It’s hard to fall asleep knowing that your son is miserable, and it’s hard to fall asleep knowing that tomorrow may be a worse day than today. That’s a huge mental factor for me, and for him as well, of course. But for me, I have the worry about the doctors and the cost. Unfortunately, there’s a lot of cost that goes into managing eczema and trying different medications.

Our lifestyle modifications have been many. We had to allergy-proof our house. Our dog did pass away not long ago, and that was one thing that they believed was a trigger. Although when he had allergy testing, it did come out negative for her. But we were advised never to have another animal in the house. We allergy-proofed the entire house, and that meant removing all carpets, replacing them with hardwood floors, and encasing all of our mattresses and all of our pillowcases. We have HEPA [high-efficiency particulate air] filters all over the house, and those are just for his allergies.

We address challenges differently for every situation. If it’s another child who is having an issue, or who he’s having an issue with, we might go about it differently. Many times, it’s just educating the parent or the teacher or the principal. He has unfortunately been called names, and he has had a few bouts of issues at school. He did come home one time telling me that he had been called a monster at school. For that, not only did I reach out to the teacher, but I also had to have him evaluated. I’ve had him see a therapist, and I’ve seen a therapist. We’ve had to do all that because it’s not just a disease of the skin: It affects every aspect of your life, especially your psychological health. It’s been a huge factor that we’ve had to try and fix along with the skin, the psychological issues, the invisible issues that you don’t see.

Some of our specific challenges have been making sure that his skin is also hydrated. That includes a lot of education for the school nurse. He has to have lotions at school. Whenever he feels he’s too dry, his skin is itchy and cracking, he can go to the nurse to apply his lotions. A lot of this includes various physician notes, letters, and permissions. But at this point in time, we have been with the same school district for so long that my son is able to just walk out of his classroom and say that he needs to go to the nurse. It has taken a long time to get to this point, but I’m grateful that we have been able to get to this point. It’s really important for him to feel like he has some control over his eczema, such that he is able to say, “I’m itchy, I need help, let me go fix this.” We always have all his medication stocked and ready to go in the nurse’s office.

This video was supported by Pfizer.