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Muscular Dystrophy UK is here for everyone with Charcot-Marie-Tooth disease, right from the point of diagnosis
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Charcot-Marie-Tooth disease (CMT)

There are around 23,000 people in the UK living with Charcot-Marie-Tooth disease (CMT). Muscular Dystrophy UK is here for you, whether you’re a parent facing a new diagnosis, or an adult who has been living with the condition for some time.

Although the condition does not affect life-expectancy, it is important that its symptoms are managed. Access to the right specialist care is vital.

There is currently no treatment available to address the underlying genetic causes of CMT. Muscular Dystrophy UK is funding research into the process that cells use to gather nutrients from their surroundings. The aim is to find out what role this process plays in CMT, which may suggest potential approaches the development of future treatments.

Muscular Dystrophy UK is the only charity with a team that gives direct support to families in clinic and provides information and advice in every part of the UK.

With the help of people living with CMT, 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.

As symptoms of CMT 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.

Most importantly, we want you to know you’re not alone. If you’d like to meet other families living with CMT, 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

 

Find oure more by reading our Factsheet about Charcot-Marie-Tooth.

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