Tardive Dyskinesia Support Resources

Tardive dyskinesia patients must deal not only with physical discomfort often associated with the disorder, but the social implications as well. Cultures particularly in Western societies, place a great deal of emphasis on appearance and "body language.".

Patients with tardive dyskinesia are often subject to involuntary, uncontrollable movements of the facial muscles and jaw, such as as rapid eye blinking and rolling, grimacing, vacuous chewing motions, sudden and frequent protrusion of the tongue, lip smacking and pursing and more. All of this can be quite disconcerting and disturbing to those around the patient. This can make a patient feel uncomfortable and sometimes depressed.

The good news is that tardive dyskinesia victims are not alone. Although it is a relatively rare condition, tardive dyskinesia still affects about 30 percent of all patients who have been medicated with dopamine antagonists, either for mental illness or gastrointestinal disorders.

Specific Organizations

A helpful place to start when searching for support groups and help for tardive dyskinesia patients is an organization called Worldwide Education and Awareness for Movement Disorders (WEMOVE). This organization's focus is not limited to tardive dyskinesia, but addresses patients with movement disorders. Through the organization's Web site, patients are invited to share stories and participate in online seminars on movement disorder issues. Visitors to this site will also find searchable databases of medical specialists and treatment centers as well as listings of meetings held across the U.S. and Canada.WEMOVE's main offices are located in New York City.

Based in Rockville, Maryland, the National Institute of Mental Health (NIMH) is an agency of the federal government. The majority of publicly-funded mental health research is conducted through this organization. Tardive dyskinesia patients can also download publications on the agency's Web site about the condition and learn about support for current research and clinical trials for which they may be eligible.

The National Institute of Neurological Disorders and Stroke (NINDS) is an another federal agency also located in Maryland. The organization's Web site contains a wealth of information regarding funding, grants, research programs and clinical trials.

Because tardive dyskinesia is a relatively rare disorder, finding local, real-world support groups can be a challenge. However, the three resources above are excellent places to begin. The organizations detailed may be able to refer tardive dyskinesia patients to local services and groups. Patients may also contact local hospitals and local state or county health departments for more information.

Free information packet on Tardive Dyskinesia

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