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…
The organization where I work is governed by a model that asks each employee to have a self-care plan. Each month, our supervisor is supposed to ask if we’ve been using it and what they can do to help ensure we do so. Honestly, I don’t even know what’s…
A year and a half ago, while scrolling through social media, I encountered a wonderful form of tattooing that I hadn’t seen or heard before. This delicate art form is known in the industry as restorative tattooing. Its mission is to restore a physical attribute to a person who’s lost…
He checks in with her and tells her he misses her when she’s gone. She tries to like sports and ask questions about the subject, just because she knows how much Jonah cares about it. She sends him photos when she’s on vacation. He regularly sends her the dumb…
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…
Get regular updates to your inbox.