Member Spotlight: The TMJ Association
The TMJ Association, Ltd. (TMJA), a Research!America member, was founded in 1989 in Milwaukee, WI by two TMJ patients. The organization’s mission is to improve the quality of health care and lives of everyone affected by Temporomandibular Disorders (TMD), commonly called TMJ. TMD are a complex and poorly understood set of conditions characterized by pain in the jaw joint and surrounding tissues with limitation in jaw movements. TMD pain may range from mild discomfort to severe and intractable accompanied by jaw dysfunction necessitating a feeding tube for sustenance. For many sufferers, their ability to chew, swallow, make facial expressions, and even breathe is limited. It is estimated that over 35 million Americans suffer from TMD; the majority are women in their childbearing years.
With no scientific guidance and no research into treatment strategies, health care providers are incapable of making evidence-based treatment decisions for TMD patients. The result has been more than 50 unproven treatments ’ including drugs and surgery ’ recommended to TMD patients. When treatment goes awry, pain and dysfunction worsen. So the need for research remains paramount. The only entity currently funding TMD research in America is the National Institutes of Health (NIH).
TMJA is the national voice for TMD patients, respected by health professionals and researchers, by policy makers at NIH, other government agencies and Congress. As a result of international scientific meetings co-sponsored by TMJA and NIH, there is a growing consensus among scientists that TMD should not be considered solely as an orofacial or dental problem. Rather, it is now viewed as a complex family of disorders mediated by genetics, as well as environmental and behavioral factors. Moreover, there is mounting evidence that many TMD patients also experience other co-morbid pain conditions such as endometriosis, vulvodynia, and fibromyalgia. Realizing there is strength in numbers, TMJA has partnered with patient advocacy associations to form the Chronic Pain Research Alliance, whose advocacy for research led to the first-ever NIH-sponsored workshop on overlapping pain conditions with the aim of developing a research agenda. The belief in strength in numbers also explains the TMJA’s commitment to Research!America. This is especially important as research-funding agencies face the fiscal restraints resulting from sequestration.
In addition to the personal advocacy of TMJA’s president, Terrie Cowley, the Association uses its website with monthly updates on research and items of interest, its annual science journal and mail announcements to urge support not only for TMD, but for the research enterprise overall. We urge advocates to contact their elected officials and individual agencies stressing the importance of keeping the research momentum going. What is at stake is not only the loss of American leadership in research discoveries and innovation, but the hope for an improved quality of health care and life for the millions of TMD patients.