Our peer support network can put you in touch with other people living with the same condition as you. You may have just been diagnosed, seen a change in your condition, or just want to talk about what your condition means for everyday life. You can find out more on the peer support network pages.
Laurie Wallis has oculopharyngeal muscular dystrophy (OPMD), a rare genetic muscle disorder that typically becomes apparent between the ages of 40 and 60. She says that peer support offered by Muscular Dystrophy UK helped her accept her diagnosis.
She said:
“When my OPMD was confirmed in 2003, it was a difficult piece of news to receive. I left the hospital without a nurse or anyone else checking that I was alright to go. I had nobody with me, and it was several hours before I called on a very good friend to share the news. I told him I’d just been diagnosed with muscular dystrophy and then just burst into tears.
“There was no professional help or support offered to me. That’s why I found out about MDUK, the work they do, and the support that is available through their regular group meetings. I have been proactive about attending the Muscular Dystrophy UK meetings when I can, and I’ve been able to make new friends as a result. I don’t want anyone to be left without the right amount of help and support when they need it.”
There are lots of other ways to find support. You can attend our local meetings of Muscle Groups, who meet all over the UK to get support and advice on conditions, find out about local services, and meet other families. Together with our new Afternoon Teas, they are a great chance to meet other people near you. Find your local Muscle Group here.
And if you are young disabled person, our 700-strong Trailblazers network is a great way to meet other people, and join our campaigns and meetings. As a first step, you can join our busy group on Facebook now.
Find out more about the services we offer.
Laurie Wallis is fundraising for Muscular Dystrophy UK by walking the Isle of Wight Coast Path. To find out more, visit her JustGiving page.