On Monday we held the first oculopharyngeal muscular dystrophy (OPMD) support group meeting in London. The information and networking morning was the first of its kind and was attended by over 20 individuals with OPMD and their families from across the country. The group heard updates on the latest research and clinical trials relating to OPMD as well as sharing experiences, offering support to each other and developing a plan to formalise the group.
The development of the OPMD support group was championed by one of our patient representatives from the West Midlands Neuromuscular Forum, Bryan Gould from Stourbridge who himself has OPMD. Bryan had never met anyone apart from his direct family with the same condition, so he was keen to meet others from across the country.
The information and networking morning gave those attending the opportunity to meet each other, and build a network to share advice and support. This included how best to tell family and friends about symptoms and how to improve health professionals understanding of this rare conditions. The group identified factsheets on anaesthetics and statins produced by the Muscular Dystrophy Campaign as being particularly useful.
The group also want to develop ‘top-tips’ for managing OPMD and for talking to family and friends about how the condition affects them day-to-day. Once developed these can be shared through the OPMD network and on the Hub website.
Building on the success of the first OPMD support group meeting we are keen to launch a formal OPMD support network, with members receiving newsletters, building connections through social media and having regular meet ups.
Speaking about the event Bryan said:It was really comforting and beneficial to meet with others with this same rare condition. Previously only being in contact with a handful of sufferers by e-mail, the opportunity to meet in person with those and a extended group was fantastic.
Rebecca Johnson from the Muscular Dystrophy Campaign said:
Being diagnosed with a rare condition can be extremely isolating and so often we hear from people who did not know where to turn to get advice or support. I am very excited about the launch of a formal OPMD network which will enable people with OPMD to link up, and support each other to access appropriate care, advice and support.
If you would like more information or to become involved with the OPMD group you can join the email group by getting in contact with Lloyd Tingley on 020 7803 4804 or email@example.com.