New alert card launched for people with myotonic dystrophy type 1

Published Date
Alexa Follen
Care & Support

Muscular Dystrophy UK’s Bridging the Gap team are pleased to announce the launch of a new alert card for people with myotonic dystrophy type 1.

This new card will mean that people living with myotonic dystrophy type 1 and their families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect children and adults with these conditions.

The alert card is conveniently shaped to fit inside a wallet and outline key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health. To make sure the cards are effective they cover a wide range of possible symptoms and situations. The card also includes important contact information on a person’s specialist neuromuscular and respiratory teams which will ensure expert advice will be much easier to access.

The cards have been produced by a multi-disciplinary team made up of people living with myotonic dystrophy, partner charities and leading neuromuscular specialists, to ensure they are an effective information tool for families and health care workers.

Dave Anderson MP, Chair of the All Party Parliamentary Group on Muscular Dystrophy said:

“Having lost a brother, sister, nephew and two nieces to myotonic dystrophy, I know all too well the devastating impact that this condition can have on individuals and their families. The new myotonic dystrophy alert card is such an important initiative – paramedics may have never treated someone with the condition before, and there is a real risk of people being administered treatment which could be harmful to their condition, or even potentially life threatening, without the relevant information immediately available for this rare condition. I would urge everyone with myotonic dystrophy type 1 to contact Muscular Dystrophy UK for an alert card, and to carry it with them at all times.”

The new cards follow on from the successful launch of our Duchenne muscular dystrophyCharcot-Marie-Tooth disease (CMT)Spinal Muscular Atrophy (SMA) and Limb-girdle muscular dystrophy symptoms and alert cards, of which more than 2000 cards have already been sent out to people living with muscle-wasting conditions across the UK. These cards, which are the first in a new line of condition-specific alert cards developed by the charity have received great feedback from families who are already using the new resources and finding that they are having a positive impact on their lives.

Muscular Dystrophy UK is currently working with neuromuscular clinical experts on the development of further condition specific cards for Becker muscular dystrophy, myotonic dystrophy type 2, congenital muscular dystrophy and facioscapulohumeral (FSH) muscular dystrophy.

To receive the myotonic dystrophy type 1 alert card you can order by emailing or calling the Muscular Dystrophy UK Freephone helpline on 0800 652 6352.

Bobby Ancil, Neuromuscular Outreach Manager said:

“Helping professionals to provide the best possible healthcare to people with muscle-wasting conditions is a vital part of the work Muscular Dystrophy UK does. I’m happy that we can now launch the new myotonic dystrophy type 1 alert cards which will ensure that health professionals have access to information on the specific health needs of people living with this condition.

We are also developing an online care plan which can be filled in together by a person with a muscle-wasting condition and a specialist health professional. The new care plan, which will be available to people with all neuromuscular conditions, will detail important information about a person’s condition and will provide guidance to non-specialist health and care professionals and working with people with muscle wasting conditions.

To receive your own myotonic dystrophy alert card please order it by emailing or by calling the Freephone helpline on 0800 652 6352

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