Elaine

Sample letter for others to use!


Dear Sir:

We are seeking your assistance to help thousands of our fellow TMJ sufferers that have been dealt a terrible injustice. The issue that we bring to your attention is a serious one. We ask that you sponsor a bill to provide funding:

1) to remove the TMJ implants, and then

2) to provide medically necessary post-implant treatment, including pain treatment, and to

3) direct the NIH to provide funds for research into the craniofacial and systemic problems resulting from TMJ implants.

This concerns a condition called "Temporomandibular Joint Diseases and Disorders," commonly referred to as TMJD. According to the National Institute of Health, over ten million Americans suffer from TMJ Disease/Disorders. Both males and females can get TMJ disease/disorders, however 90% are women between puberty and menopause. According to the National Institute of Health, "Temporomandibular Joint Diseases and Disorders (TMJ) refer to a collection of medical and dental conditions affecting the temporomandibular joint and/or the muscles of mastication (chewing muscles), as well as related tissue components." The TMJs are the two tiny joints in the front of the ears that attach the lower jaw (mandible) to the skull (fossa). Not only do the jaw joints rotate as other ball-and-socket joints, they translate (move down and forward). The disc is a wafer-thin piece of tissue acting as a buffer between the skull and the condyle (top of the mandible). When intact, they are the only joints in the human body that work together as a unit. These joints allow us to perform such functions as opening and closing the mouth, chewing, swallowing, breathing, kissing, talking, etc., all things that people with healthy TMJs take for granted. Problems that can occur with the temporomandibular joint are arthritis, trauma, tumors, tearing or dislocation of the disc. TMJ diseases/disorders runs the gamut from a clicking or popping jaw and mild discomfort to complete jaw dysfunction and severe and intractable muscle and nerve pain.

The majority of TMJ patients experience temporary discomfort and gradually get better with or without treatment. However, for many others, it can be the beginning of a nightmare in which lives are destroyed, dreams shattered, families torn apart and people left bankrupt, desperate and without hope. If you suffer with TMJD, you may have spent years of your life and thousands of dollars being referred from one doctor to another hoping for relief.

As TMJ Diseases/Disorders patients, we can attest to the above nightmares. However, in spite of our pain, we consider ourselves to be the lucky ones. Many individuals suffering from TMJ disease/disorders received TMJ implants. Unfortunately, there has been nearly a 100% failure of the TMJ implants. The implant materials fragment, causing damage to bones and tissues surrounding the TM joint, and migrating to other areas of the body. These patients are slowly dying painful deaths. Removing the implants is essential. However, even after the implants are removed, the implant materials continue to cause damage and tremendous pain. Consequently, these people are disabled, due to the craniofacial and systemic damage caused by these implants. That's why we are writing this letter. We are fighting for our friends and co-sufferers.

Implant patients have been failed not only by the implant manufacturers and surgeons, but also by medical insurers, state governments, and the federal government, including the FDA and NIH. Inadequate scientific studies were done before implants were used. Because the FDA approved these devices, surgeons implanted materials which are destroying the bodies of implant patients. There has never been a registry of TMJ implant patients, however it is estimated that approximately 100,000 people have received these implants. We do know that many of them are dying. We have been alerted to four deaths since January, 1999 that were a consequence of secondary problems arising from implants and multiple surgeries.

Many medical insurers do not cover TMJ treatment of people with TMJ disorders; they are allowed to dismiss it as a dental problem or exclude TMJ coverage entirely. Without insurance coverage, many of the implant patients cannot afford to have their implants removed nor the subsequent medically-necessary treatments. Though the implant is recommended to be removed, it does not alleviate the pain, dysfunction, or problems that are a progression of TMJ implant disease.

TMJ/Implant patients are ignored by the medical establishment and by society itself. TMJ patients lack the political clout of the more established diseases, and we have no celebrities to arouse national attention to this serious problem. Because the NIH has ignored directing funds toward this disease, this disease has not been given proper scientific attention.

In its absence we are suffering the stigma associated with diseases that medical and basic research have no answers for. Our government should not ignore a situation the FDA allowed to occur.

Help is needed to remove the implants, to provide pain treatment, and to research and treat the damage done by the implants and the materials left after the implants are removed.

We hope to hear from you,

Sincerely,