The tooth of the matter: Navigating dental problems with EB

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. I learned this the hard way: by avoiding the dentist for a decade, only to face a marathon of crowns, fillings, and pain that I’m still working through.

As a young, working mom of three, my life was a whirlwind of diaper changes, Band-Aids, overtime hours, and trying to keep my kids as safe and healthy as possible. The dentist? That was a luxury I couldn’t fit in. For about 10 years, I skipped those appointments. I wasn’t reckless; I brushed and flossed every day, determined to keep my mouth in check. But EB doesn’t play fair. Between soft-tissue sensitivity and enamel struggles, my teeth were quietly taking a beating.

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Then there were the pregnancies — three of them. Growing tiny humans and then breastfeeding each one for months didn’t just drain my energy; it sapped my teeth, too. I didn’t realize how much the combo of EB, pregnancy, and breastfeeding was stacking the odds against my teeth until I finally dragged myself to a dentist.

The verdict? Five crowns and five fillings. A decade of avoidance had caught up with me, and it wasn’t pretty. I’d walked in hoping for a quick checkup and walked out with a treatment plan that felt like a part-time job.

Fighting for my oral health

That was four years ago, and I’ve been a regular at the dentist’s office ever since, catching up on years of neglect while juggling life with EB and my kids. Even now, I’ve got two fillings left to tackle. It’s been time-consuming, expensive, and, let’s be honest, painful. Dental work with EB isn’t just about the drilling; it’s the sore gums, the risk of blisters in your mouth, and the dread of explaining your condition to yet another hygienist.

But here’s what I’ve learned, and what I want you to know if you’re in the same boat: You’re not alone. Dental problems sneak up on those of us with EB because our bodies are already so busy. Brushing and flossing can only do so much when your enamel’s weaker or your diet’s limited by what your mouth can handle. Add in life — kids, caregiving, or just surviving — and it’s easy to put off that appointment. I get it. I did it. And I paid the price.

These days, I’m trying to find a balance. Regular dental visits are nonnegotiable now, even if they’re a hassle. I’ve found a wonderful dentist who gets me (or at least tries to). It’s not perfect, and my wallet is still recovering, but I’m fighting for my teeth and my health.

So, if you’re reading this and you’ve been dodging the dentist, I see you. Maybe you’re scared of the pain, the cost, or you’re just too tired to deal. But take it from me: Your teeth deserve a little of that EB warrior spirit, too. Start small. Find a dentist who’ll listen. And if you’re a caregiver, nudge your loved one toward that checkup — gently, of course. We’ve got enough battles; let’s not let our smiles lose this one.

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.