Living with epidermolysis bullosa (EB) is a daily lesson in resilience. One challenge that doesn’t get enough airtime: our teeth. If you have EB, or care for someone who does, you’ve probably noticed that dental problems come with their own special brand of chaos.
It’s Sunday as I’m writing this. I have a long to-do list today that includes grad school work, laundry, this column, and making sure my son knows how to back up without his rear camera and complete a three-point turn. Jonah, who was born with junctional epidermolysis bullosa (…
I’m currently working on accepting my physical imperfections. At this point in my life, motherhood and epidermolysis bullosa (EB) have been the greatest contributors to insecurities about my appearance. With motherhood, my body has transformed into various shapes and sizes, while EB has left me with scarring and…
Jonah got his first promotional card from a college last week. We were told that my son, who’s now almost 16, very likely wouldn’t make it to his first birthday, because he was born with epidermolysis bullosa (EB). Now he’s just received an invitation to check out a college.
Have any of you ever had to share a “fun fact” about yourself following the awkward icebreaker prompt? I’ll go first this time. I don’t have toenails. Loss of toenails is one of my most loathed physical symptoms of epidermolysis bullosa (EB). This anatomical difference has caused me a…
Note: This column describes the experiences of the author’s son with dupilumab. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Jonah, my son with epidermolysis bullosa (EB), and I just made another trip to Chicago right before Christmas. This…
I was diagnosed with epidermolysis bullosa simplex (EBS) of the Köbner type (now simply known as generalized EBS) when I was just 18 months old. Epidermolysis bullosa (EB) is a rare genetic disease that causes extremely fragile skin that blisters easily and heals slowly. I don’t remember being…
Holidays and vacations always seem to highlight the little things about epidermolysis bullosa (EB) that make life different. My son Jonah has it much better than many other children with EB. Thankfully, he doesn’t deal with…
Over the past two weeks, my heart has been incredibly heavy, my eyes full of tears, and my soul full of sorrow as I witnessed the suffering of friends and co-workers in Western North Carolina. The destruction caused by Hurricane Helene is catastrophic. If you’ve never been to the North…
“Mom, I need you upstairs,” Jonah said. “What is it?” I asked. “I just need you,” he responded. “Come right now.” Typically, exchanges like this one don’t happen nearly as much as they used to. As Jonah, my son with epidermolysis bullosa (EB), has gotten older, he’s become more…
I used to pray every day that God would heal Jonah, my son. I don’t pray for that anymore. It’s not that I don’t think God could do it. I’ve just come to believe that a snap-of-the-fingers miraculous healing won’t be how it happens for Jonah. I might be right…
Independence. It’s a concept we think about a lot this time of year. Together as a nation, we observe Juneteenth and the Fourth of July. And in the “land of the free,” we celebrate summer with beach trips, cookouts, watermelon, pool parties, fireworks, parades, outdoor concerts, and baseball games under…
Get regular updates to your inbox.