Like many people who have been diagnosed with Charcot-Marie-Tooth disease or who believe they may have it, Jori Reijonen attended the CMT Clinic at Wayne State University, held at Detroit Medical Center in Detroit.
The Detroit facility is currently the only CMT clinic in the world, and patients from all over the United States and more than 12 countries have been evaluated there.
Led by doctor Michael Shy, professor of neurology and molecular medicine and genetics at Wayne State, the CMT clinic began in 1997.
Its aim is to provide clinical care for patients with CMT, as well as to conduct clinical research studies to learn more about the natural history and progression of patients with CMT and related conditions, with the ultimate goal of finding therapies.
According to Shawna Feely, a genetic counselor at the CMT clinic and an assistant professor of neurology at Wayne State, a double-blind, placebo-controlled study of high doses of ascorbic acid (Vitamin C) treatment is being conducted among patients at the clinic and two other sites, and several other compounds are being tested in animals.
Studies conducted at the CMT clinic, including gene therapy approaches, are funded by the Charcot-Marie-Tooth Association, the Muscular Dystrophy Association, and the National Institutes of Health.
Feely says that patients are referred to the clinic by a wide variety of specialists, including primary care physicians and neurologists, but that patients do not need a referral to contact the clinic.
Evaluation at the clinic, which takes a full day, includes meeting with a genetic counselor and tests such as motor unit function, nerve conduction velocity tests, hand function tests and skin biopsies. Neurologists in the clinic go over each patient’s medical history and perform neurologic examinations. Physiatrists address rehabilitation needs, such as braces and physical and occupational therapy, and orthopedic surgeons are also available.
The clinic bills patients’ insurance companies, but also makes arrangements to see patients who do not have insurance or whose insurance does not cover the complete visit.
For more information on the CMT clinic of Wayne State University, visit neurology.med.wayne.edu/neurogenetics/about_clinic.php.