Fragile but Fierce – a Column by Patrice Williams

Patrice is mother to two boys: 8-year-old Gideon and 11-year-old Jonah, who was diagnosed at birth, in 2009, with junctional epidermolysis bullosa. She is married to her sort-of high school sweetheart, Matt. They live in North Carolina with their two smelly dogs. Patrice loves reading, spending time with family, and being outside. Her greatest talents are taking naps and eating tacos. She hopes this column will give hope to those living with epidermolysis bullosa and light to those who love them.

How We Began Educating Our Community About EB

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 the stares, block him with my body, and do the educating…

A Few of Our Favorite Things

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 amid the struggles? Our family has made several…