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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,…

The first time I ever heard from her or saw her name was March 2, 2009. She left a comment on my blog when I was in the depths of gripping fear and the deepest sorrow. These were her words to me then, when…

I spent the last two hours at work the other day reading song lyrics, poetry, and quotes. Along with my communications team, I was attempting to brainstorm a name and tagline for the new adoption program we’re launching at our child welfare agency. I’ve also been using Google to search…

Last year, I sat down with my friend to watch our sons play football. She confided in me that she was concerned about her son continuing to play because he’d been showing symptoms that raised a red flag: slow growth, frequent injuries, and other issues that didn’t add up for…

Have you ever read “Alexander and the Terrible, Horrible, No Good, Very Bad Day“? Here’s a short excerpt: “I went to sleep with gum in my mouth and now there’s gum in my hair and when I got out of bed this morning I tripped on the skateboard…

At 20, I welcomed my first child via cesarean section, a moment of joy that came with unexpected challenges because of my mild case of epidermolysis bullosa (EB). While my skin is sensitive and blisters easily, my EB is manageable compared with many others with the condition. Still, the…