....from diagnosis to a cure!
Muscular Dystrophy UK is pleased to announce that they are creating a new network of peer support volunteers. The network will provide support to people who have been recently diagnosed with a muscle-wasting condition, as well as their families.
The network follows on from a recent survey which found that many people felt isolated after being given a diagnosis of a muscle-wasting condition. Within the survey people said that one of the types of support they would benefit from around diagnosis was support from their peers.
It was felt that there needed to be a network for families affected by Myotonic Dystrophy, as well as DM1 and DM2. We found it extremely difficult to find information, experiences and support specific to the Congenital and childhood form of the disorder, and this is a gap which we hope to help fill.
MDUK are working with Neuromuscular centres, and a group of more than 50 peer support volunteers to ensure that people are able to speak to others who have an understanding of having a muscle-wasting condition. Our team at Cure DM are working towards being your contacts for Myotonic Dystrophy. We will be available to provide emotional support following a recent diagnosis, and at any other stage in your journey.
To enable us to effectively support recently diagnosed families Muscular Dystrophy UK will ensure:
Rosanne Diaz, Care, Information and Advocacy Manager said:
"We are regularly asked by people with muscle-wasting conditions that if at the time they are diagnosed with a muscle-wasting condition, they could be put in contact with someone who has experience of their situation. We are really pleased to be setting up this new network which we hope will now provide people with peer support that will benefit them."
You can see more on this on the MDUK site HERE
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