Published date 07/08/2015
Author: Lloyd Tingley
People living with muscle-wasting conditions are telling us that our new alert and symptoms cards are making a real difference to their lives.
Since December 2014 we have launched alert cards that include vital emergency information for people living with Duchenne muscular dystrophy, Charcot-Marie-Tooth disease, Spinal Muscular Atrophy and limb girdle muscular dystrophy.
In the space of just a few months we have sent out over 4,000 of these cards to families living with these conditions and neuromuscular care advisors across the UK.
Muscular Dystrophy UK has heard from many families about the impact the cards have made to their lives, ensuring that they feel more secure about the healthcare that themselves or their child will receive in an emergency situation. This feedback is detailed in our new ‘carry the card report’ which features the experiences of how the new cards have helped people affected by muscle-wasting conditions. Some of the feedback from the report is featured below:
Jane Bloxham from Brackley, who is a manifesting carrier of Duchenne muscular dystrophy said:
“I carry my alert card every day. As I’m still working, my alert card is useful to have throughout my work day to alert medical professionals, as well as my colleagues, should any situation arise that would require its use. It is also the perfect size to keep in a plastic wallet along with my identification badge for work so it’s easily carried around throughout the day.”
Leanne Barry from Ashford, whose son Toby has Duchenne muscular dystrophy said:
“The card is clear and contains all the essential information while maintaining an accessible size and format. I also felt that until now, not everyone fully appreciated the severity of Toby’s condition and the information offered by the alert card gave them a clearer picture of the condition’s seriousness. As a result, I find the card affords us all great peace of mind that should any emergency arise, the right people will possess the right information.”
David Gale from Carlisle, who has Becker muscular dystrophy said:
“I think that creating an alert card for people with Becker muscular dystrophy is a great idea. It is important to be able to easily inform a health professional of all the important features of Becker muscular dystrophy, particularly in an emergency. The Becker alert card will make sharing that information with professionals much easier when its launched later this year.”
Over the next few months we will be launching cards for more specific muscle-wasting conditions including, Becker muscular dystrophy, congenital muscular dystrophy, facioscapulohumeral muscular dystrophy and myotonic muscular dystrophy types 1 and 2 as well as an online care plan that will be helpful to people with all muscle-wasting conditions.
If you would like to receive an alert or symptoms card or find out more information about upcoming care plans and alert cards please email firstname.lastname@example.org or call the Muscular Dystrophy UK freephone helpline on 0800 652 6352.