by Heather Grace IPJ Editor In Chief

EDSers, let’s talk teeth! When it comes to Ehlers Danlos Syndrome, dentistry is a topic that doesn’t get nearly enough coverage. When’s the last time you’ve seen dentistry/EDS discussed anywhere?

Pain can be uncontrolled for EDS patients at the dentist.


I discovered shocking information last year while searching for EDS dental experts. There’s a reason going to the dentist is harder for us than the average person…


People with Ehlers Danlos Syndrome respond poorly to common dental anesthesias, ie Novocaine. As a result, we’re in more pain at the dentist than most could ever imagine.

Educate your dentist about your specific needs.

Have YOU ever felt like you were given no shot at all before the drilling began? I have. Far too many times. Tears streaming down my face, I’ve dug into the arms of the dentist’s chair with such intensity my entire upper body hurt by the end. I’ve felt like I was being tortured. Now I know: it’s EDS related.

When I finally found out, I’ll be honest, I was devastated. Such torment, such loss. It was a lot for me to face, knowing I could’ve avoided so much misery. Had I known, I also may have prevented the serious dental problems I’m now contending with.


Ouch! It hurts!

So dental anesthesias don’t work well for us. What do we as people with EDS do with this information?

Obviously, share it far & wide. You could prevent someone from walking away from dental care, too traumatized to go back. Believe me, it happens!

At the dental office, we must manage our pain the best we can. By working with the dentist just as we do all other healthcare providers, we help them to understand us. We also help them to learn about our illness. It’s my hope that by sharing this, many Ehlers Danlos patients will benefit. Like you. Preventing others from the suffering I’ve experienced is a huge victory — even if my own mouth is a war zone.

Important Steps:

  • 1. Ideally, find a dentist/dental office knowledgeable about EDS.
  • 2. Failing that, EDUCATE  your dentist/hygienist. Give them this information as well as the link below, created by a dentist.
  • 3. Work with your dental office to find an anesthesia that works for you, if possible. It’s helpful to start with the ones known to be effective for other EDS patients &/or your family members.
  • 4. Opt for nitrous oxide and/or IV sedation to complement local anesthesia or in place of it. Obviously, you’ll need your dentist to understand why this may be the best/only option in your case.
  • 5. Get extra shots, if you must. If you can’t find a dentist who’ll work with you, tell your dentist a single shot of their standard local anesthetic is not likely to be enough. Let them know you’re concerned about the serious side effects you can experience, such as the jitters & even racing heartbeat or palpitations.
  • 6. If applicable, make sure you to say that you’ve got EHLERS DANLOS SYNDROME in big block letters, on every form you’re asked to fill out. If you’re like me & painful dental visits have been an ongoing issue, indicate that you HAVE PROBLEMS WITH LOCAL ANESTHETICS & require assistance with choosing the best anesthesia for you. Additionally, it may be helpful to let staff know you may need special bracing &/or frequent breaks in order to ensure that you are able to tolerate the treatment you know you need. Communication is key!



See Ehlers Danlos in Dentistry: Local Anesthesia Concerns by Nicholas B. Calcaterra DDS at

This is the link I stumbled onto & am so glad I found it. Thank you, Dr. Calcaterra!


I didn’t immediately go online with this when I read it late last year, unfortunately. Why? Tho hard to admit, my last dental visit was so nightmarish that I developed PTSD. I didn’t want to face it. It wasn’t just the fear. The whole situation made me feel foolish. And worse, irrational.

I’ve been through so much in my life, it seemed bizarre that a single dental visit could have such a profound impact on me that I hadn’t returned since THAT visit. I’m working to rectify this now as best I can, knowing the damage I caused myself when I was unable to act.

I’m also trying not to be too hard on myself. It felt like my teeth were being ripped out of my mouth without any numbing. That’s because in essence, they were. Knowing the truth has given me my power back. All I can say is: better late than never.

NOW, I NEED YOUR HELP: PLEASE SHARE THIS INFO! Share this article & accompanying links on social media & with EDSers, caregivers, doctors, dentists. Everyone!

Other Commonly Known EDS Dental Issues

  • neck/back instability
  • softer than average teeth/bone
  • gum disease & bleeding
  • small jaw/close together teeth
  • breaks/bracing needed during dental work
  • cavities deeper than expected
  • dentists/hygienists thinking we’re lazy/don’t care for our teeth
  • jaw hypermobility/jaw pain causing improper bite & cracked/broken teeth
  • mouth guard needed at nite
  • dental erosion/soft toothbrush is a must
  • fillings/root canals/crowns/bridges/partials/dentures, often or at early age
  • difficulty making correct bite for dental mold
  • possibility impacted wisdom teeth are linked with EDS*

*To be fair, that last one is my own observation. In the dental world, IMPACTED means teeth with roots wrapped around the jawbone/very difficult to remove. This has been an issue for myself, as well as family members & 2 other EDSers I know. A piece of my jaw bone had to be removed when extracting 1 of my wisdom teeth. Yes, this too was done under local anesthesia.


Heather Grace is a Speaker, Writer & Advocate who is active on social media. She lives with Intractable Pain caused by the genetic illness Ehlers Danlos as well as a spinal cord injury/severe nerve damage that lead to Complex Regional Pain Syndrome. Heather worked for many years on the planning committee developing For Grace’s ( annual Women in Pain Conference and as a Grant Researcher/Volunteer Advocate for the American Pain Foundation.

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