Viewing 9 posts - 1 through 9 (of 9 total)
  • #175699
    Hello

    Hi I’m Hannah I’m 24, I have congenital muscular dystrophy, I’m interested in getting to know some young people with MD. I was wondering anyone want to get to know each other. I know about trailblazers but some personal connections might be nice :)

    hanar
    Participant
    Posts: 2
    Joined: 31/03/2015
    #175703
    Reply To: Hello

    Hi Hannah,

    I have a type of CMD although I’m not sure I’d class myself as young anymore lol I’ve just turned 41. I live in East Sussex.

    We have some members with CMD who may introduce themselves here. Also, if you are not already aware, there is a Facebook group linked to Cure CMD which is based in America but has members from all over the world, (quite a few from
    UK) so it might be worth joining Cure CMD Support Group

    Muscle groups are another way you can make personal connections within the MD community. Have you ever been to your regional meeting?

    Great to have you on board. Keep in touch :D

    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
    #175707
    Reply To: Hello

    Hi thank you for your reply.

    I requested to join the CMD group.

    I haven’t been to a regional meeting yet, I’ll look into it :) !

    hanar
    Participant
    Posts: 2
    Joined: 31/03/2015
    #175846
    Reply To: Hello

    Hi Hanar, :wave:

    I’m not as young as you at 36 but i also would like to get to know fellow peers with MD. I have FSHD and diagnosed 3 years ago, although that was a formality as there is family history, i already had a strong indication as to what was going on.

    I work full time and have recently graduated with a degree and Post Graduate Certificate. The condition is affecting my walking and stability which has begun to limit my mobility, to get around this i have now got a mobility scooter which i use for sight-seeing holidays or long day trips.

    Please don’t hesitate to ask any questions.

    Starbrite

    Starbrite
    Participant
    Posts: 0
    Joined: 01/03/2019
    #175848
    Reply To: Hello

    Hi nice to meet you. oh you’re a postgraduate? In what? and what do you work as if you don’t mind me asking :)

    I need to invest in a scooter too! Would help with the shopping!

    hanar
    Participant
    Posts: 2
    Joined: 31/03/2015
    #175849
    Reply To: Hello

    Hey Hanar,

    I’m a Post Grad in Environmental Management and a Graduate in Environmental Science. Although i used to work with children up until 5 years ago, I now work for a water and sewerage company investigating pollution incidents.

    I have a Luggie mobility scooter if that helps, its small and only weighs the same as a full suitcase.

    Tell me about yourself, do you work?

    Starbrite

    Starbrite
    Participant
    Posts: 0
    Joined: 01/03/2019
    #175859
    Reply To: Hello

    Oh awesome. At the moment I’m doing a placement as part of the MD moving up project but I also work for another disabled charity and a shop. It’s all voluntary. I’d love to find paid work :) I also studied film and photography at university

    hanar
    Participant
    Posts: 2
    Joined: 31/03/2015
    #175905
    Reply To: Hello

    Hi,

    I’ve never heard of the MD moving up project, what is it?

    Starbrite
    Participant
    Posts: 0
    Joined: 01/03/2019
    #175908
    Reply To: Hello

    its a project for young disabled people to get a placement at MD offices :)

    hanar
    Participant
    Posts: 2
    Joined: 31/03/2015
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