Treatment Burden of Adolescent-Onset Alopecia

Matthew: Lifestyle modifications that I made with the hat was easily the biggest burden but when I was in the dugout at baseball, getting ready to bat, I would quickly slip my helmet on and stuff I just didn’t want anyone to see. I was very self-conscious.

Tony: He was trying to hide. He was hiding from the disfigurement that alopecia universalis results in. I’ll never forget when I took him to football. This was probably 3 months after Matthew started his treatment on the JAK [Janus kinase] inhibitor. It was the first time that [he] got out of the car, had a tackle football game, but he had his helmet in his hand and he did not have a hat. That feeling was—it was a Sunday afternoon when he got out of my car—it was perhaps one of the greatest feelings I’ve ever felt was knowing that Matthew was comfortable being himself again because he was not himself.

Jamie: As far as the costs of alopecia, the time costs, we went to a lot of doctors. It cost a lot of time. This all happened during the height of the [COVID-19] pandemic. There are some parts of the pandemic that exacerbated some of the experience in a negative way but at the same time, I can tell you, I had a little bit more flexibility with work, so it was a little easier for me. I’ve been to New Haven [Connecticut] with Matthew twice now, and we’re going to go again in May, but we’ve been to Hyde Park at the University of Chicago, which is far from our house. A bunch of times, we’ve been to Lurie [Lurie Children’s Hospital, Chicago, Illinois] many times. There’s a couple of dermatologists in there who we were looking into. We spent time to travel, the research time.

Tony: Financial costs were great. Traveling to different doctors, getting hospital bills, or I should say doctor bills, trying different treatments, looking on the internet, the hours that were spent on there, easily spend 100-plus hours going to multiple websites numerous times and reading the same information over and over. The cost was financial. The cost was the time spent researching. Selfishly, as a parent, you want your kid to be happy. Buying things that you maybe otherwise wouldn’t have gotten for your child because you want your child to be happy and try to escape. We were looking for an escape. The cost sure was the doctor bills, but the cost was also time plus cost of trying to keep Matthew happy and maybe purchasing things that you wouldn’t otherwise get a 12-year-old. There was no limit to what we would not do to restore Matthew’s confidence.

Transcript lightly edited for clarity.