New limb-girdle muscular dystrophy alert cards launched

Published Date
29/07/2015
Author
Alexa Follen
Category
Campaigns

Muscular Dystrophy UK’s Bridging the Gap team are pleased to announce the launch of two new alert cards for people with limb-girdle muscular dystrophies types 1 and types 2.

The two new cards will mean that people living with limb-girdle muscular dystrophy 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 limb-girdle muscular dystrophy alert cards are 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 new cards follow on from the successful launch of our Duchenne muscular dystrophy, Charcot-Marie-Tooth disease (CMT) and Spinal Muscular Atrophy (SMA) 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.

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

To receive either the limb-girdle muscular dystrophy alert card  types 1 or 2, you can order by emailing info@musculardystrophyuk.org or calling the Muscular Dystrophy UK Freephone helpline on 0800 652 6352. When ordering your card please state what sub-type of limb-girdle muscular dystrophy you have if you know it so that we can ensure you are sent the correct card.

Zoe Hallam, who has limb-girdle muscular dystrophy and is from London said:

“I am really pleased that these new alert cards are now available for people with limb-girdle muscular dystrophy. The cards are in a clear easy to read format and are a size which makes it easy to have with me at all times. This means health professionals will have access to the most important information about my condition in an emergency situation or at a general health appointment.”

Lloyd Tingley, Neuromuscular Outreach Officer 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 limb-girdle alert cards which will ensure that health professionals have access to information on the specific health needs of people living with limb-girdle muscular dystrophy.

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

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 limb-girdle muscular dystrophy alert card please order it and tell us what type of limb-girdle muscular dystrophy you have by emailing info@musculardystrophyuk.org or by calling the Freephone helpline on 0800 652 6352

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