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…
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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.
When we decided to enroll our 5-year-old daughter, whom we’ve nicknamed “Little Star,” in a music and piano course, we didn’t do it with the future in mind. With her epidermolysis bullosa, “future” is a fragile word, one you learn to whisper. We don’t know how long she will…
Typically, I’m not big on New Year’s resolutions. I am a fairly intelligent and hardworking person, but I hate failing. So, for me, welcoming the new year with haven’t-done-it-yet-so-probably-won’t-work-now resolutions feels like putting my best foot forward just to give up the walk 10 days in. Look, I know this…
The holiday season always seems a little strange to me, as it’s a time for family and looking forward, but also a time to look back. This holiday season, I’m acutely aware of the narrowing of our family’s faith community over the last five years. Until 2020, having a faith…
When our 5-year-old daughter, whom we lovingly refer to as “Little Star,” was born, the epidermolysis bullosa diagnosis arrived suddenly and immediately reshaped the way we imagined our life together. In a single moment, all of our certainties dissolved, replaced by a world of wound dressings, needles, creams,…
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