Forming a Support Network for Atopic Dermatitis

April 27, 2020

Caregiver Erika Czopkiewicz reflects on how she and her son were able to find and form support networks to help overcome the difficulties presented by atopic dermatitis.

Caregiver Erika Czopkiewicz reflects on how she and her son were able to find and form support networks to help overcome the difficulties presented by atopic dermatitis.

Transcript

Erika Czopkiewicz: I try to keep myself up-to-date on management and any progress in the eczema world through various ways. I am a registered nurse, and I do have the privilege of working with a lot of physicians, a lot of them being dermatologists. I always have my ear open for any new treatments. My dermatologist is also incredibly amazing. He is one of the eczema gurus.

Coping was a huge thing for us. The only reason we are where we are today is through the support of my friends and my family. We really needed support. We did not have anywhere to go to, anywhere to turn.

The National Eczema Association did exist. However, we were not aware of its existence, not until he was about 10 years old. Until then, our only support was family and friends and each other. When we did finally find the National Eczema Association, I was ready to tell the world that I needed help and that I was tired of dealing with this by myself. After being told by so many physicians that there is nothing in the world they can do for your son, it really takes a mental toll.

Being a caregiver to a patient, a son, with eczema has been my hardest nursing job ever. I’ve got to say, my patients at work are a lot easier to deal with. My son and I have fought together, we’ve cried together, we’ve yelled at each other, and my goodness, I think we’ve both walked out on each other as well. It’s been such an emotional rollercoaster, as well as a physical one for him. Our biggest challenge, my biggest challenge, is to get him to do something, to get him to listen. I don’t think that he quite grasps the repercussions of not taking a shower or applying lotion or taking his medications.

For emotional support, my son usually comes to me. He has a couple of friends who have been with him since he was in kindergarten, and they know about him. They’ve seen his skin; they’ve seen the worst of it, and they’ve see the best of him. I don’t know if he tells people about his skin. I know that he will openly say, “It’s just eczema, you’re not going to get it” or, “My skin looks this way because it’s eczema,” but I don’t really think he speaks much of the emotional aspect. I think he just tries to be a normal kid, so he hides it as much as he can. When he’s flaring, he does wear long sleeves and long pants and he just tries to go on about daily life.

I really feel that his friends are probably his best emotional support, though I feel that he hides a lot of it. For me, my best emotional support would be my family, my husband. He’s been through it all with me. He’s been through the ups to the downs, the celebrations, the crying, the screaming, and the fighting that he’s heard over the years. Especially my mother. She’s the one who actually found the National Eczema Association. She’s the reason why we went, why we met the physicians that we did, and why we’re in the position that we’re in. It’s because of her. She’s been our No. 1 cheerleader. Without her, I don’t know where we would be.

This video was supported by Pfizer.