Columns

When I reflect on my experience with recessive dystrophic epidermolysis bullosa, one thing that has helped me get through the toughest times is my hobbies. My mother always told me that from the time I began talking, I was also singing. She knew this could become an important part…

“We need to put sunscreen on you,” I said again to Jonah, my (sometimes stubborn) teenager who lives with epidermolysis bullosa (EB), as he stood out in the sun because he was shivering under the shade of the Shibumi. As Jonah ages and his skin doesn’t blister quite as…

In the 38 years that I’ve been living with recessive dystrophic epidermolysis bullosa (EB), I have learned that those of us with the condition, as well as those who care for us, must adapt over time to the extra preparation the disease requires. When I was a child,…

I walked across the stage earlier this month and received my master’s degree after two years of grad school. My husband, sons, siblings, and mom cheered for me from the stadium stands. “That’s my mom!” my 13-year-old son, Gideon, yelled after the cheering subsided. The audience collectively aww-ed while I…

Authorities in the U.K. have approved Krystal Biotech‘s gene therapy gel, Vyjuvek (beremagene geperpavec-svdt), to treat wounds in people with dystrophic epidermolysis bullosa (DEB) who have disease-causing mutations in the COL7A1 gene. The approval from the U.K.’s Medicines and Healthcare products…

Like many of you, I recently celebrated Mother’s Day with my two munchkins. We had a nice, relaxing day, and I even managed to fit in a little yoga and R & R. It also gave me time to reflect. Mother’s Day has become more expansive over the years. There’s…

My mother taught me at a young age not to let recessive dystrophic epidermolysis bullosa (RDEB) define who I am or let it get in the way of who I want to be. I hoped to show others that I was just like everybody else and wanted to be…

Ever since my daughter was diagnosed with epidermolysis bullosa (EB) in December 2020, I’ve been on a journey. A crusade, really, to understand clinical trials and drug development, connect with nonprofits, and even enroll in a biotechnology management program — all in an effort to find a cure or…

“I just bought a prom ticket,” my son Jonah, who lives with epidermolysis bullosa (EB), texted me a week before the event. I responded with three giant ‼️ emojis (making six giant, red exclamation points, in case that was unclear). Like the unexcitable person that I am. I had…

Epidermolysis bullosa (EB) is, in many ways, a very visible disease. You can see the bandages. The wrapping. The wounds. The scarring. Even if someone doesn’t know exactly what EB is, they can tell something is wrong. But there is still so much that goes unseen, and sometimes, that’s…

Back in mid-January, my son Jonah, who battles junctional epidermolysis bullosa on a daily basis, got the flu. I had (unintentionally) neglected to get him a flu shot, and although it was influenza B — supposedly the less severe strain — and he was on Tamiflu (oseltamivir), it kicked…

Every couple of years, I interview my son Jonah, who was born with junctional epidermolysis bullosa (EB). After all, it’s his life I’m writing about, so it’s good to get his perspective. Excerpts of our conversation, lightly edited for clarity and style, follow. PW: You’re about to turn 17.