I’ve struggled with TMJ disorders for 15+ years since I was first diagnosed at the age of 13. Due to lack of research and information—my condition went untreated and was misdiagnosed for over 10 years until my life became completely unmanageable. By the time they figured out what was going on, the damage was irreversible and permanent. I was diagnosed with a rare jaw disease called Idiopathic Condylar Reabsorption (ICR) which led to bilateral bone on bone osteoarthritis of my TMJs. This could have been prevented if I had proper treatment and if there was more research available. I want to share my experience and journey to help others by raising awareness, providing resources, information and research, in addition to providing support and connecting others who truly relate. All are welcome to join our community on this Facebook group to connect with others and for more additional support—join the mentorship feature for more personalized, one-on-one support.
Hope, I am so sorry you have had to go through this ordeal for so many years! Many of us, go through the same thing. We just can’t get a proper diagnosis, and treatment early enough. I have had bouts of TMJ, and in fact I took a fall, all on my right side, on July 4th morning early …I tripped over a step that goes into a huge tub/sauna etc I have. I got up to check on my ups, fireworks had woke them up… and even though I have walked past that step 100’s of times, somehow my foot or shoes caught it. I fractured my collar bone, my shoulder blade, I hit my head almost had a concussion, my hip, and I hit my “jawbone” on that side also… I am having issues with it, and I have osteoarthritis and RA, plus Osteoporosis. Thank you for your raising awareness about this. I know many of us do appreciate it. I’ll check out the Facebook page! ur issues sometimes more than not are now considered “rare” disorders simply because they are just NOW after sometimes decades finding out what they are, what causes them and so forth. Best regards, and again Thank you Rhia