Research spurred by the TMJ Association (TMJA) over the years has confirmed that a number of disorders often co-occur in TMJ patients, especially in patients in whom Temporomandibular disorders (TMD) are chronic. Many of these disorders, such as irritable bowel syndrome and fibromyalgia, are also painful, leading the Association to establish the Chronic Pain Research Alliance, an initiative to stimulate research on Chronic Overlapping Pain Conditions.
But there are also disorders, not necessarily painful, that also occur more often in TMJ patients than chance would dictate. Ehlers Danlos Syndromes (EDS), affecting some 7 million in America are a case in point. As the illustration shows, people with EDS have hypermobile joints (sometimes loosely referred to as being “double-jointed”). As a group, EDS are considered inherited connective tissue disorders caused by abnormalities in the structure, production, and/or processing of collagen. Symptoms range from mildly loose joints to serious complications. Features shared by many EDS types, besides joint hypermobility, are soft, velvety skin that is highly stretchy and bruises easily. Genetic variants in a number of genes may lead to EDS, however, the underlying genetic cause in some families is unknown.
Lisa Schmidt, a member of TMJA’s Board of Directors, and a patient advocate, was diagnosed at 47 with EDS. Lisa is currently working on the development of the TMJ registry project of the TMJ Patient-led RoundTable. In that context she became aware of an EDS patient registry and also found that she was qualified for inclusion in the HEDGE study, a research project on hypermobility limited to 1,000 participants. Lisa approached the Ehlers Danlos Society about bringing more awareness to their members of TMJ Disorders and the Society invited her to speak at their annual meeting this past August. We were delighted that Lisa was able to able to educate meeting participants and would also like to thank the Ehlers Danlos Society for providing us with Lisa’s presentation to share with our readers.
Note: On other occasions, TMJA has been invited to make presentations to nonprofit advocacy groups about TMJ to inform and educate their members about TMJ and any possible connections between TMJ disorders and their conditions. These occasions also serve to lessen any disinformation or misinformation about TMDs that all too often has led to stigmatizing TMJ patients.