Challenges Finding Positive Support for Alopecia Online

Tony: Jamie was a big emotional support for both Matthew and myself. I turned to the internet. I turn to message boards, alopecia forums, things that probably are not the healthiest thing for a parent to do. When you’re spending hundreds of hours on the internet, it’s a dark place because you’re looking for solutions that aren’t really solutions. It’s false hope whether it be rubbing garlic on Matthew’s head. One day I wanted to go buy a bunch of garlic. We’re going to rub it all over your head. Those are the thoughts that are not healthy. I was turning to the internet and reading every single thing I could possibly find. What will make my son whole again? That’s what I turn to, which is not healthy. Thankfully that we found Dr King [Brett King, MD, PHD, Yale School of Medicine, Middlebury, Connecticut] and found the solution for Matthew. Don’t turn to the internet for hundreds of hours. It’s not good.

Matthew: There were none. There were no social media accounts that were helpful really.

Jamie: We tried going to a support group online at the University of Chicago. We went twice, I think. The first time it wasn’t helpful. We did try that. I really wanted to try anything that made sense. I did a mom’s alopecia group and it made me more depressed, on Facebook. Like Tony said, it was so traumatic. It’s kind of when you have a trauma like that, there’s a grieving process. It’s almost like a death, and I think that it was too fresh. We weren’t at that point yet, but we were fortunate to get the help that we needed. I think Tony and I were a good team. He was the researcher.

Tony: We balanced each other out. We didn’t find the support groups on the internet. I was in a dark place, but Jamie was the emotional support. I did a lot of the research. It pains me to think that there’s kids, there’s people, adults, everyone that may not have the support that Matthew had. He had a team behind him. He had a mom that loved him, hugged him, did everything she possibly could for him, and he had a dad that was doing the research and we got through our darkest time. We’re on the other side of it now. For those people that don’t have that support system, I can’t imagine because when you withdraw, you might not do the research. You might not know what the answers are. Certainly, when we went to doctors, they did not bring up the JAK inhibitor. They don’t have the history with it, so we had to feel comfortable with it. If there’s people with this disease, they may not know. They may not be able to do the research. Even if they’re capable, they mentally might not be able to do the research that we were able to do.

Jamie: Can I just add 1 thing, too? I just want to say that Dr King—we went to a lot of doctors—he was the first one who also, I feel like made us understand. When you hear something from a doctor, it’s different than when you maybe perhaps read it online or think about it on your own. He was the one who said this is not just about Matthew. This is about your whole family and there’s mental health tools and you need to take care of you. No one had said that to us before. It’s such an important component of any experience like this and I appreciated that. It almost gave me that reinforcement I needed to say it's OK that I felt that this was hard, but it gave me the energy to say we’ve got this, even more than I already had. I feel like that was a big deal for us. He didn’t just treat Matthew. He treated all of us.

Transcript lightly edited for clarity.