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Muscular Dystrophy UK is here for everyone with myotonic dystrophy, right from the point of diagnosis

Myotonic dystrophy

About 9,500 people in the UK have a form of myotonic dystrophy. It is a group of inherited conditions that show muscle weakness and myotonia.

We at Muscular Dystrophy UK want you to know you’re not alone. If you’d like to meet other families living with myotonic dystrophy, just to talk, share experience or get some advice, we can put you in touch.  Our helpline team is also here for you to offer support and advice. Do get in touch on our freephone helpline 0800 652 6352 or info@musculardystrophyuk.org.

With the help of people living with myotonic dystrophy, we’ve put together some useful information, including tips and advice about day-to-day life with the condition. We also have other resources, which have been accredited by the Department of Health’s Information Standard. That means you can trust the information – it’s accurate and up-to-date.

The myotonic dystrophy groups include:
myotonic dystrophy type 1 (DM1)
myotonic dystrophy type 2 (DM2)

We have further factsheets on:
congenital myotonic dystrophy
the myotonic dystrophies

The condition primarily affects the hands and ankles but also affects other organs and is associated with cataracts, disturbance of the heart rhythm and, in children, learning disability. The symptoms show enormous variability ranging from severe symptoms present at birth to the development of cataracts as the only symptom in middle age. The conditions are caused by ‘unstable mutations’ that tend to get worse when passed from generation to generation.

As symptoms of myotonic dystrophy progress, you may need to have your home adapted or apply for benefits and services that are all new to you. Our advocacy team can help you get what you are entitled to, by giving you advice or acting on your behalf. There’s also the Joseph Patrick Trust – Muscular Dystrophy UK’s welfare arm – that awards grants towards the cost of specialist equipment. You can find out more here.

 

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