A Family’s Experience Supporting an Adolescent with Alopecia

Tony: How we are supporting Matthew to cope with alopecia is a struggle. Certainly, the struggle is easier now that he’s restored his hair, but certain things like taking the medication, certainly 1 issue. Before Matthew started the JAK [Janus kinase] inhibitor, we noticed he was withdrawing. I was withdrawing, so we started taking him to a social worker and seeing someone to talk about that. That was before we knew whether Matthew was going to grow his hair back or not. I’m not in those sessions with the social worker, but I believe it helped maybe make sense for Matthew. Maybe give him someone else to talk to other than Jamie or myself. There was only so much we could do. We were in a dark place. Matthew needed someone else who wasn’t his parent to talk to. Certainly, I think those social workers, hopefully, they helped. It’s going to be a challenge for the rest of Matthew’s life, taking the medicine, following up with doctors and treatments, and certainly that restoration of his confidence, it’s going to be a battle. We’re a lot further along than most anyone who’s experienced this disease. We moved and we were able to get a solution, but we’re not going to give up. That battle’s going to continue from now and probably for the foreseeable future. It was traumatic. The loss of Matthew’s hair was traumatic for him. It was traumatic for Jamie. It was traumatic for myself. It was traumatic for his brothers. That’s something we’re going to need to support Matthew going forward because those memories are never going to go away.

Jamie As far as turning to people for emotional support, we have a beautiful, strong family. We’re so lucky for that so we had a lot of support there, but again, we were separated because of the [COVID-19] pandemic so it was also hard in that regard. I went to a therapist. In order to try to support him, I needed to support myself. I couldn’t do it. Neither could Tony. There was so much on everyone’s plate and just watching him struggle, all I wanted to do was be his cheerleader but at the same time needed to make sure I had the energy that I needed to be able to do that and for Tony too.

Transcript lightly edited for clarity.