October 14, 2015 at 12:24 pm #75695Congenital muscular dystrophy alert card launched
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.
Read more and order your card today – http://bit.ly/1VRBMay
Muscular Dystrophy UK staff memberAlexa FollenModeratorPosts: 32Joined: 12/05/2015October 15, 2015 at 1:10 pm #97024Re: Congenital muscular dystrophy alert card launched
A card for my codition(s) would be great! Andersen Tawil Syndrome/Myopathy/Poly-Nueropathy.
I myself have in the past had to print stuff off from the HKPP site & carry it around in my handbag but it isn’t always accessed.
Part of the problem I think is that HKPP site is an American site and my condition is extremely rare but it does have lots in common with most of the neuromuscular conditions eg problems with anaesthetics, certain medications etc..
Also when I have a full/serious episode I cannot usually speak or even blink so communicating is very difficult.
So an English Alert card from a known trusted organisation would be very useful.October 16, 2015 at 9:32 pm #97028Re: Congenital muscular dystrophy alert card launched
I understand they have produced alert cards for a few types of MD with more in the pipeline, watch this space…
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015
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