Fragile but Fierce — Patrice Williams

Like with everything involving epidermolysis bullosa, finding the best bandage routine for our son Jonah, who was born with EB in 2009, has been a process of trial and error. The same process certainly doesn’t work…

Like many teenage girls, when I was younger I imagined what my future would look like. I pictured a wedding with a loving husband, a house with a white picket fence, and at least two kids.

Dear Jonah, When you were born with epidermolysis bullosa, they told us there was an 85% chance you wouldn’t make it to your first birthday. But this past Saturday you turned 12. Twelve years…

There are days when Jonah, my 11-year-old son with epidermolysis bullosa, and I feel like educating folks about his condition. And there are days when we don’t. When he was younger, I would intercept…

Jonah, my 11-year-old son who has epidermolysis bullosa (EB), is wounded from head to toe and must be covered in lifesaving bandages every single day. These bandages not only cover his current wounds, prevent infection, and promote…

In another bummer turn of events, my 11-year-old son Jonah woke up on Sunday morning with a corneal abrasion. These, and the types of blisters he experienced on Christmas, are two of the most painful things…

Our Christmas started out like most people’s. Well, sort of. We, like many, kept it small this year. On Christmas Eve, we did bath and bandage change in the afternoon. It never really feels like a holiday…

I am an extrovert by nature. Most of my life I have gotten my energy from being around other people. I value others’ opinions, points of view, camaraderie, and comfort. I love to laugh and have…

Oprah recently released her Favorite Things 2020 list, and it got me thinking of my own favorites list. What are some of the things that have made our lives a bit easier…

My mom got an adorable kitten last weekend. When I showed my boys the sweet picture she texted us, Jonah questioned me about our cat that we re-homed when he was little. (Photos courtesy…

Last in a series. Read part one. After our son Jonah was born with junctional epidermolysis bullosa, we made the difficult decision for him to get a gastrostomy feeding tube. Once it was…

First in a two-part series. Our son Jonah, who was born with junctional epidermolysis bullosa in 2009, struggled to eat from the beginning. It was one of the main reasons he had to remain in the NICU…