New CMT symptoms card launched

Published Date
Lloyd Tingley
Care & Support

Muscular Dystrophy UK is pleased to announce the launch of a new symptoms card for people living with Charcot-Marie-Tooth disease (CMT). This new card will mean that the 23,000 people living with CMT in the UK will now have the security of knowing they can easily inform people, including health care professionals, of the vital and specific issues that affect people with this neuromuscular condition.

The CMT symptoms card is conveniently shaped to fit inside a wallet and outlines key information about symptoms as well as precautions that a non-specialist clinician would need to know about CMT. The new card has been developed by a team made up of people living with CMT, leading neuromuscular specialists, the Bridging the Gap project and CMT UK to ensure that it is an effective information tool for people living with CMT and health professionals.

Muscular Dystrophy UK has already received positive feedback about the new symptoms card from people living with CMT. Judith Wellby from Leicestershire, recognised that her own issues with breathing at night could be related to sleep apnoea, which the symptoms card explains is commonly experienced by people with CMT. Since reviewing the card Judith has now requested that her GP refer her to a respiratory consultant to carry out further investigations.

Judith said:

“Before I read the CMT symptoms card I had no idea that my breathing difficulties at night could be related to having CMT and that sleep apnoea was common to people with this condition. I am excited to see the launch of the CMT symptoms card and hope that it will be able to help other people in the UK with CMT as much as it has helped me.”

Neuromuscular Outreach and Support Officer Rebecca Johnson said:

“Families often tell us that they need something informative, to the point and easy to use if they find themselves in a situation where they need to let someone know about their CMT. This new alert card will mean families are empowered to inform health professionals, employers, schools or anyone else that needs to know, about their CMT and how it affects them as well as any precautions that may need to be taken into consideration.”

To receive the card you can email or call the Muscular Dystrophy UK freephone helpline on 0800 652 6352.

The CMT symptoms card follows on from the Duchenne alert card in our line of new condition specific cards and care plans that are being worked on by Muscular Dystrophy UK and partner charities. We are currently developing information care plans and alert cards for people living with spinal muscular atrophy, myotonic dystrophy, Becker muscular dystrophy, OPMD, and limb girdle muscular dystrophy, as well as a generic neuromuscular online care plan. We will then develop similar resources for other neuromuscular conditions.

More details about the Muscular Dystrophy Campaign’s alert cards can be found in the personal support section of the hub. You can also view a PDF file of the alert card and the information within it.

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