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Children can be very curious and ask anything that comes into their minds. As a young child in elementary school with recessive dystrophic epidermolysis bullosa (RDEB), I would get curious looks and stares from many students at my school. Some children would ask me questions like, “What happened to…

This has been the summer of trips, which is totally unlike our typical summer. We go to Cousin Camp annually, but it’s typically the only big trip we take. But recently we were invited by family to come to Montana for the week, and we absolutely could not pass…

A couple of weeks ago, our whole family was supposed to head to Florida, partly for a baseball tournament and partly for vacation. The trip came right on the heels of our beloved Cousin Camp (this year went much better than last, in case you were wondering), and my…

The process of seeking and obtaining employment can be daunting for anybody. Job searching requires confidence, creating professional résumés, and researching multiple job opportunities to figure out which would be the best fit. As someone born with epidermolysis bullosa (EB), I had to consider additional factors as I began…

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…