New facioscapulohumeral muscular dystrophy alert card launched

Published Date
Alexa Follen
Image of Martyn who has FSHD

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

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 FSHD such as Martyn Blenkharn from Morecambe (pictured).

The FSHD 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 neurologist 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 FSHD alert card, you can order by emailing or calling the Muscular Dystrophy UK Freephone helpline on 0800 652 6352.

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

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

  •  Oculopharyngeal muscular dystrophy (OPMD)
  •  Undiagnosed muscle-wasting conditions
  •  Inclusion Body Myositis (IBM)
  •  Myopathies

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 FSHD alert card or find out more information about our care plan or upcoming alert cards please email or call the Muscular Dystrophy UK freephone helpline on 0800 652 6352.

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