17 years later, I’m still learning how to navigate EB — and parenthood

17 years later, I’m still learning how to navigate EB — and parenthood

“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 much thanks to the dupilumab injections he’s receiving through a clinical trial, he’s experimenting more and more with wearing fewer bandages. Although he has been going without a…