Advice for Patients with Alopecia and Their Caregivers

Matthew: Advice that I’d give for someone who’s newly diagnosed with alopecia would be to stay as strong as you can. This was tough for me.

Tony: Advice I would tell someone who’s going through this is there’s false hope and there’s real hope. You must be comfortable with what steps you take to treat this disease and you have to be comfortable with the doctors. For the doctors, I would tell them to treat the whole person, not just the disease. There’s a lot of unknowns. It’s a relatively new medication, but it treated the whole person of Matthew. It didn’t just treat his hair. It didn’t treat his eyebrows. It didn’t treat his eyelashes. It treated him mentally and physically. That’s extremely important for doctors to understand. You have to treat the whole person. The way that our child withdrew, and I withdrew, it’s more than just hair. It’s restoring the whole person.

Jamie: I would agree. In the beginning I was so relieved that it wasn’t something life-threatening that I was hesitant. I was trying to just keep everybody positive. We’re not dealing with something that’s life-threatening, but in a way, it kind of is because depression is dangerous and it’s very much a part of this disease. Not just for Matthew, although primarily for him, but for all of us. I second Tony’s comments. Again, I think that Dr King [Brett King, MD, PHD, Yale School of Medicine, Middlebury, Connecticut] was the first one who made us feel like that’s what he was treating, every aspect of Matthew, and Tony and me and that all trickled down to my other 2 boys who needed their parents, too.

Tony: We were so focused in treating Matthew that the other 2 were champs. Matthew has 2 younger brothers. They were there to support him, but they also understood that we had to take care of Matthew too. But when you’re a parent and you’re treating your child, you don’t want to forget the other 2. It’s a balancing act and not everyone’s got an awesome family as we’re blessed to have so you want doctors to understand more than just hair. It’s not just hair.

Matthew: Dr King, when I first went, he made me feel hope more than any of the other doctors. When he introduced this medicine, it gave me hope that my hair was going to come back.

Tony: Made you feel good.

Matthew: Made me feel really good for the first time in a long time.

Transcript lightly edited for clarity.