15-year-old Matthew and his parents discuss the initial signs of alopecia that they noticed in their son and reflect on the effect his diagnosis has had on the family.
Jamie: Our family first noticed symptoms of alopecia in July of 2020. Matthew had the size of a quarter patch of hair missing in the back of his head. I took him to the pediatrician, and she did a whole evaluation and said he has alopecia but that was it. It was this little spot and it was gone and nothing else, no change. Then, about a month later, late August of 2020, suddenly, the hair just started to fall out over the course of like 7 to 10 days. Correct me if I’m wrong, until like 60% to 70% of his hair fell out, and the rest followed in the weeks after. We’ve been on quite a journey with doctors. We started with a dermatologist. We went with my dermatologist because we were so nervous trying to get him to a doctor. We’re fortunate to live in Chicago [Illinois] and be surrounded by wonderful healthcare providers and wonderful institutions so we were able to take Matthew to see a dermatologist at Lurie Children’s [Hospital, Chicago, Illinois]. We were able to take him to see a dermatologist at the University of Chicago, both of whom we treated with for a while. We started with some conservative treatments but ultimately, we didn’t see any response to the treatment. Tony, my husband did a wonderful job researching and we ended up at Yale with Dr King [Brett King, MD, PHD, Yale School of Medicine, Middlebury, Connecticut]. That’s where we are now. His treatment plan for Matthew has been a life-changing experience for all of us.
Tony: Some of the difficulties that we experienced with Matthew’s diagnosis when it first started, we didn’t know what was going on. It was a dark place. One of my parents, my father passed away, and then we had COVID[-19] and those were dark times. Then for us, as a parent, watching Matthew lose his hair so rapidly in the span of a week, just shedding hair in the driveway. I remember when I first noticed it. It was the worst feeling as a parent when something happens to your child. You see that transformation and it’s happening so rapidly, and you don’t know what’s happening. Then it developed to the eyebrows. It developed to the eyelashes. And within a month or 2, Matthew was completely void of any hair. It sent me into a dark place as a parent and it sent Matthew into a dark place. It was something that I would not wish upon any parent to have to experience, let alone a child that’s 12 years old at the time, 6th/7th grade. Everyone goes through struggles in life. For us, it was horrible. It was traumatic not only physically for Matthew losing his hair, but the mental challenge was something that I will never forget. We’re fortunate to be sitting here today.
Matthew: To go through that experience, it sucked not having any hair. Sometimes kids would look at you. It was not good. I did not like it at all.
Tony: What was your hardest day?
Matthew: When I lost my last eyebrow.
Tony: When he lost the eyebrows, we would look for an escape. We were looking for things to do, to try to get away from the pain of losing his hair. For us, those escapes weren’t always healthy. We weren’t paying attention maybe as much as we should have with the schoolwork. We were trying to do everything we could to support Matthew’s emotional well-being. When I wasn’t in a good place, Jamie wasn’t in a good place. It’s really hard to do. The hours we spent on the internet looking at different treatments, different options. Every time we made a doctor’s appointment, we would go see a new doctor. It brought us hope, but ultimately it was you go to the doctor, and they prescribe you something and you think there’s that hope. It was a great feeling but then when there was no improvement, you’d go back into that dark place. At that point, being able to go see Dr King and go onto the JAK [Janus kinase] inhibitor and see such a rapid improvement, you can restore, not only restored Matthew’s hair, it restored his confidence. That as a family we are so thankful for because it was, I get the tingles even thinking about it, it was the hardest time I think, in my life, for sure, and obviously Matthew and Jamie’s as well.
Transcript lightly edited for clarity.