OPMD (Oculopharyngeal Muscular Dystrophy) is one of several types of muscular dystrophy (MD). MD is a group of genetic, degenerative diseases primarily affecting voluntary muscles. Although named for the muscles first affected, the eyelids (oculo) and throat (pharyngeal), OPMD also can affect facial and limb muscles. OPMD symptoms usually appear during adulthood most, often between 40 and 60 years of age. Although OPMD is a progressive disease, its progression is usually fairly slow. There is no cure for OPMD, but there are a number of therapies, surgeries, and corrective devices such as “crutch eyeglasses” that can help patients cope with this disease. There are also a number of drug therapies on the horizon that may offer relief from some symptoms.

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We love to hear you stories and information about treatments, symptoms and side effects of Oculopharyngeal Muscular Dystrophy (OPMD).

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Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Anyone whose life has been touched by a rare disease is welcome in a Ben’s Friends community. Most of our members are patients, but we have spouses and parents, besties and caregivers here as well.