What is LivingWithOPMD Patient Support Community?
Living with OPMD is a dedicated patient-to-patient support community for families affected by Oculopharyngeal muscular dystrophy (OPMD). Living with OPMD is powered by BensFriends.org, patient support communities for rare diseases, and is run by volunteer moderators who have been affected with OPMD.
Who can join LivingwithOPMD Patient Support Community?
If your family has been affected by OPMD, consider LivingwithOPMD your second home. LivingwithOPMD, as well as the rest of BensFriends.org’s patient communities, is free for members to join.
What is OPMD?
OPMD (Oculopharyngeal Muscular Dystrophy) is one of several types of muscular dystrophy (MD). Muscular Dystrophy 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.
What is BensFriends.org?
In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.
BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, BensFriends.org provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives.
You can learn more about BensFriends.org at http://www.bensfriends.org or watch one of our videos at http://www.youtube.com/BensFriendsVideos.