Columns

For National Family Caregivers Month, I took the opportunity to interview my son Jonah about his care experience as a teenager living with epidermolysis bullosa. PW: What’s the hardest part about needing caregivers as a teenager? JW: I would say it just limits me in general. I’m always having…

In honor of National Epidermolysis Bullosa Awareness Week, held Oct. 25-31, I want to give readers a glimpse into my daily routines and some personal aspects of my life with epidermolysis bullosa (EB) that few get to see. First, I’d like to describe my daily medication routine. I…

Look here. I don’t know how it happened, but we are already in October of my baby’s senior year of high school. And I don’t know if you know this, but the thing that typically happens after a senior year is this thing called college. And preparing for that is,…

I started elementary school in the mid-1990s. The internet was still in its early stages, and there wasn’t nearly as much research and knowledge about epidermolysis bullosa (EB) as there is today. Before I began school, my mom taught me how to talk about my condition because she…

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…