Peer Support.

CMMD support in conjunction with MDUK

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 new 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.

This is something we echoed when we met with MDUK in London this August. We felt there needed to be a network for CONGENITAL Myotonic Dystrophy, as well as MD1 and MD2. We found it extremely difficult to find information, experiences and support specific to the Congenital 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 CMMD-UK are working towards being your contacts for Congenital 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:

  • All peer support volunteers are professionally trained, enabling them to provide quality support.
  • People who are recently diagnosed with a muscle-wasting condition are matched up with a peer support volunteer who is in a similar position to themselves as we understand some people will not be ready to meet those who further progressed with their condition
  • Muscular Dystrophy UK and specialist neuromuscular centres are available to advise and give one-to-one support to the peer support volunteers

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

As you can see, this is not something we can rush into, but keep looking back on to our page for updates on our training, as we work closely with Rosanne and the team at MDUK.