Epidermolysis bullosa is visible on the surface, but so much remains unseen
People can see the bandages, but not the constant need for care
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Epidermolysis bullosa (EB) is, in many ways, a very visible disease. You can see the bandages. The wrapping. The wounds. The scarring. Even if someone doesn’t know exactly what EB is, they can tell something is wrong.
But there is still so much that goes unseen, and sometimes, that’s the hardest part.
People see the bandages, but they don’t see the constant mental load behind them. The inventory of supplies. Planning bath days and dressing changes. The rotation of ointments, documentation, and doctors’ appointments. The quiet, ongoing assessment of every wound — what it needs, how it’s changing, what might help, and what might hurt. It’s relentless.
‘Mild’ doesn’t quite capture my son’s EB
I have two children with EB, William, 2, and Demah, 5. There are seasons when it flares for each of them, but right now, my son’s wounds have been more persistent, and we’re in the thick of it.
William is an adorable, car-loving, happy, and active boy. When I drop him off at day care, he runs off to play like any other child. On the surface, everything looks normal. But before he even gets there, we’ve already done wound care.
Like my daughter, he has junctional epidermolysis bullosa. His presentation is considered “mild,” but that doesn’t quite capture our reality. He has wounds from infancy that still haven’t healed. These chronic wounds, as most EB parents and patients will tell you, are a different kind of challenge. They are unpredictable, stubborn, and defy explanation.
In EB, wounds happen. You learn how to manage them the best you can. But when they don’t heal, that becomes something else entirely.
Every day, I’m analyzing moisture balance, inflammation, friction, and infection risk. What worked last time? What changed? Was it the bandage? The ointment? The itch? Something deeper? It feels like a riddle I can’t solve. EB is the first thing I think about when I wake up and the last thing on my mind before I fall asleep. It shows up in my dreams. It buzzes in the background, behind every conversation and mundane moment.
In the morning, my husband and I carefully apply ointments and rebandage William’s wounds. He wears a long-sleeve Tubifast shirt to help keep everything in place. Even then, we watch to make sure he doesn’t pull at anything, especially the wound on his neck. In the evening, we do it all over again.
The process is even more involved on bath days. Bathe too frequently, and you risk irritation. Not frequently enough, and you risk buildup or colonization. There is no perfect formula — you just constantly adjust, make the best judgment call you can, and hope it was the right one.
At night, we give William anti-itch medication to protect his skin while he sleeps. But even sleep isn’t simple. He’s developed separation anxiety, and one of the ways it shows up is by pulling at his wounds. So someone has to stay with him throughout the night, to make sure he doesn’t undo any healing that may have started.
No rhyme or reason to EB
It has taken a toll on all of us. Even my daughter asks why William’s boo-boos don’t heal, while hers do. I wish I knew the answer. It is exhausting and sometimes demoralizing. There is no break from it. I could burst into tears at any moment if I allowed myself to, but I don’t. Because right now, there is no choice. If I don’t do this for him, who will? My son deserves someone who will watch him closely. Who will try everything. Who won’t give up. Both of my children do.
I tell myself this battle is temporary. Just until a wound heals. Just until he’s older and better understands how to protect his skin. But I am starting to question what “temporary” really means. Just because my daughter’s skin improved doesn’t mean William’s will. EB is reckless like that. There is no rhyme or reason to it.
Most people never see this emotional roller coaster, either.
My husband balances me in this. He cares deeply, but he doesn’t carry the weight in the same way I do. That’s probably a good thing. We need both — the constant vigilance I bring and his ability to quiet the noise. If we both lived in this intensity all the time, it would be too much.
Maybe there’s a fine line between denial and defiance, but I refuse to let EB define my children’s lives. I really believe that better treatments and even a cure are coming. Until then, I’ll keep fighting, even if no one sees it.
Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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