New congenital muscular dystrophy alert card launched

Published Date
14/10/2015
Author
Alexa Follen
Category
Bridging the Gap
Sulaiman Khan,Trailblazer

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

The new card will mean that 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 congenital muscular dystrophy.

The congenital muscular dystrophy alert card is conveniently shaped to fit inside a wallet and outlines 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. If you are concerned about any of the issues included in the cards, your neuromuscular consultant or care advisor will be able to help.

The card has been produced by a team made up of leading neuromuscular specialists to ensure that it is an effective information tool for families and health care workers. It also includes important contact information on a person’s specialist neuromuscular, respiratory and cardiac consultants which will ensure expert advice will be much easier to access.

To receive the congenital muscular dystrophy alert card, you can order by emailing info@musculardystrophyuk.org or calling the Muscular Dystrophy UK Freephone helpline on 0800 652 6352.

Sulaiman Khan, from Woodford Green who has congenital muscular dystrophy said:

I think that the launch of an alert card for people with Congenital Muscular Dystrophy is fantastic and a very crucial step to improve our healthcare, as well as our quality of life. It is vital to be able to easily inform a health professional about the important condition specifics of Congenital Muscular Dystrophy, particularly in an emergency. The Congenital alert card will make informing professionals of this information much easier. It is wonderful that Muscular Dystrophy UK are working with healthcare professionals and patients to make these alert cards for those affected by all neuromuscular conditions.”

The new cards are part of a line of condition-specific alert cards which has so far seen Muscular Dystrophy UK launch cards for people with:

Over the coming months we will also be launching new cards for people with:

  • Facioscapulohumeral muscular dystrophy
  • Myotonic dystrophy type 2

We have been receiving excellent feedback on the cards from families who have received already launched cards in our ‘carry the card’ report.

We have also developed 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 is available to people with all neuromuscular conditions. The plan details 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.

If you would like to receive a congenital muscular dystrophy alert card or find out more information about our care plan or upcoming alert cards please email info@musculardystrophyuk.org or call the Muscular Dystrophy UK freephone helpline on 0800 652 6352.

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