Muscular Dystrophy UK has set up a new informal support group for people affected by oculopharyngeal muscular dystrophy (OPMD). Members are in touch with each other via email, sharing experiences of OPMD and how it affects them, and offering support and advice to others.
Bryan Gould from Stourbridge, a patient representative from the West Midlands Neuromuscular Forum who has OPMD, has championed the development of the new support group. With over 60 different conditions under the umbrella of ‘muscle-wasting conditions’, it can be hard to find someone with the same condition to talk to and share experiences with. OPMD is one of the rarest muscle-wasting conditions, mainly affecting the muscles around the eyes and those used for swallowing. Before the group started, Bryan had never met anyone apart from his direct family with the same condition.
Thanks to the new support group, Bryan and 12 other people with OPMD are now in touch with each other online and the group’s first face-to-face meeting is being planned for later this year.
Wendy Mullen, one of the group’s members from Richmond, said:
We enjoy linking up with each other and emailing about various health issues, as well as sharing other happenings in our lives.