New Spinal Muscular Atrophy alert cards launched

Published Date
02/06/2015
Author
Alexa Follen
Category
Care & Support

Muscular Dystrophy UK’s Bridging the Gap project are pleased to announce the launch of three new alert cards for people living with Spinal Muscular Atrophy (SMA). These new cards 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 SMA Type 1, 2 and 3.

The SMA 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. SMA affects people in different ways and so someone may not always be affected by all of the issues covered. If you are concerned about any of the issues included in the cards, your neurologist or care advisor will be able to help.

The cards were produced by a team made up of people living with SMA, leading neuromuscular specialists and partner charities to ensure that it is an effective information tool for families and health care workers. The card 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 either the SMA Type 1, 2 or 3 alert card you can email info@musculardystrophyuk.org  or call the Muscular Dystrophy UK freephone helpline on 0800 652 6352.

Michaela Hollywood from Downpatrick who has SMA said:

“I think it is brilliant that these new SMA cards are now available. The cards are important to ensure that everyone who has SMA has a comfortable journey through the health system. The cards will also improve the long-term knowledge of the condition with health professionals which will be beneficial to everyone who has SMA”

Muscular Dystrophy UK Care, Information and Advocacy Manager Rosanne Diaz said:

“People often tell us that they need something informative, to the point and easy to use if they find themselves in an emergency situation. This new alert card will mean people living with SMA are empowered to inform emergency health professionals of essential specialist information about their condition, as well as ensuring specialist neuromuscular clinicians are informed that that their patient has been admitted to a hospital.”

The new SMA alert cards follow the launch of popular condition specific cards on both Duchenne muscular dystrophy and Charcot-Marie-Tooth disease. We are also currently working with neuromuscular clinical experts  on the development of new condition specific cards for Becker muscular dystrophy, myotonic dystrophy, limb-girdle muscular 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..

More details about Muscular Dystrophy UK’s alert cards can be found in the personal support section of the hub.

To receive your own SMA alert card please order it by emailing info@musculardystrophyuk.org or by calling the Freephone helpline on 0800 652 6352.

 

To receive your own SMA alert card please order it by emailing info@musculardystrophyuk.org or by calling the Freephone helpline on 0800 652 6352.

Keep in touch