Understanding how Ehlers-Danlos syndrome affects my TMJ

A columnist has a lightbulb moment as she reflects on a teenage jaw injury

Karen Del Vecchio avatar

by Karen Del Vecchio |

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I remember watching the ball fly past my last defender and realizing I had to choose: I could either run out from the goal, in hopes of beating the other team’s offensive player to the ball and clearing it away, or get ready for a one-on-one breakaway situation. As my team’s goalkeeper in a teenage soccer game, I chose to run forward and clear the ball.

I did beat the other team’s player, and I kicked the ball away a split second before he crashed into me. Either his shoulder or his elbow hit me in the side of my jaw and launched me backward before I landed with a thud on my back. The impact with the ground knocked the wind out of me.

Once I could breathe again, I got up and started to take stock of how I felt otherwise. People were asking me questions, and I was trying to answer, but I realized that my jaw wouldn’t move. It felt stuck.

After a moment or two of trying to move it around, I felt a pop, and suddenly I could talk again. It was sore afterward, but I didn’t think much of it at the time. It was just another on a long list of soccer injuries I sustained before my Ehlers-Danlos syndrome (EDS) diagnosis at age 22.

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The next time I got X-rays at the dentist’s office, the technicians looked at the images and said, “Woah! What happened to your jaw? The ball on the left looks almost sheared flat on one side.”

I had to think about it for a few minutes. The incident hadn’t stuck in my mind, because to me, it was just another injury. But after a moment, it was clear that the soccer injury and damage on the X-rays were related. I’d apparently dislocated (and relocated) my jaw without even realizing it.

TMJ and Ehlers-Danlos

Every once in a while my jaw will flare up and bother me, mostly through a clicking in my left temporomandibular joint (TMJ), where my jaw meets my skull. It often happens when I eat crunchy or dense food. A few months ago I bit into something that was tougher than I’d anticipated, and I felt my TMJ pop. It was a little sore, but like many moments in life with EDS, it passed, and I continued on with my day.

It wasn’t even until I read the Ehlers-Danlos News article “Jaw pain disorders highly prevalent in women with hEDS: Study” that I considered the possibility of my EDS playing a role in my TMJ pain. Why, I don’t know, because it makes total sense. While the TMJ is certainly a joint, I hadn’t thought of it that way. To me, joints were the usual suspects: knees, ankles, shoulders, and hips. Once I made the connection, though, it was a lightbulb moment.

I’ve had trouble with many of my joints because of EDS, and subluxations (partial dislocations), especially in my damaged shoulder, are quite common for me. Why would my TMJ be any different?

Knowing this information might not change anything for me, but I did find it interesting. I also learned from my massage therapist that when my shoulder muscles get tight, it can affect the muscles in my neck and jaw, making my TMJ pain worse. I always appreciate understanding the various ways that EDS affects my body. Everything I learn adds another piece to the puzzle.

Note: Ehlers-Danlos 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 another 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 Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.


Rose OHara avatar

Rose OHara

We are 5 generations diagnosed with pEDS (Type 8) Apparently, it is the rarest form of EDS, which likely explains why we hear very little about this type.
We were 6 girls and 1 boy. Four of the six girls had (peridontal) pEDS. My father was the carrier.

My father and one of my older sisters passed away from complications of Alzheimer’s, My younger sister has just recently been diagnosed with dementia and I am experiencing memory issues and will be tested shortly (both of us have pEDS).- perhaps a correlation between EDS and Alzheimer’s??

I was recently diagnosed with Lichon Sclerosus. The specialist feels there could definitely be a correlation with EDS

FYI, All of us in the family with pEDS lost out natural teeth by early 20’s. At that age we were we had the mouth of an 80 year old.
I am 77 and have been dealing with a serious fall in February resulting in ongoing care.

Thank you, Look forward to hearing from someone soon.

Rose OHara
Niagara Falls, Ontario Canada

Patricia avatar


I have lichen sclerosis and had all my top teeth out at 12 as the dentist said they were too overcrowded(couldn’t do that now!) I’m 80

Mariamalia Calzada avatar

Mariamalia Calzada

My jaw started bothering me at 22… it was stuck for 2 months… had to eat with a straw for 2 months… I was diagnosed with EDSh at 48 after several joint issues and Gi issues… TMJ was my first one… it still gets painful sometimes…


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