Congenital muscular dystrophy alert card launched

Viewing 8 posts - 1 through 8 (of 8 total)
  • #75695
    Congenital 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 member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #97022
    Re: Congenital muscular dystrophy alert card launched

    Just ordered mine :yes:

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #97023
    Re: Congenital muscular dystrophy alert card launched

    Hi! Will they be producing them for all conditions?

    Shellybear
    Participant
    Posts: 364
    Joined: 09/12/2010
    #97024
    Re: 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.

    Shellybear
    Participant
    Posts: 364
    Joined: 09/12/2010
    #97025
    Re: Congenital muscular dystrophy alert card launched

    I have one of these :) They’re a little 3 fold card that fits in purse/wallet. 8-)

    weeble
    Participant
    Posts: 44
    Joined: 23/09/2010
    #97026
    Re: Congenital muscular dystrophy alert card launched

    i agree with Smellybear. I also could do with one for EDMD.

    stefan

    littlestef
    Participant
    Posts: 526
    Joined: 04/10/2011
    #97027
    Re: Congenital muscular dystrophy alert card launched

    Yes you could! Mr ! :D

    Shellybear
    Participant
    Posts: 364
    Joined: 09/12/2010
    #97028
    Re: 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 Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
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