Kyri Photiou

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Viewing 4 posts - 1 through 4 (of 4 total)
  • #129353
    Reply To: Lynnjean 17

    Hi Lynn,

    The Care and Support Team at MDUK can put you in touch with another mum who has a daughter with this condition if you like? They are part of our peer support network.

    If this might be something you’re interested in or you’d like more information please do email me on m.rees@musculardystrophyuk.org

    Best wishes,
    Maddy

    Kyri Photiou
    Participant
    Posts: 0
    Joined: 12/09/2018
    #128622
    Reply To: power chair accessories

    Hi 7rainbows,

    Thanks for the post :) I am sure the lovely forum can give you some tips!

    If you got your powerchair through wheelchair services it might be worth seeing if they can give you some advice too?

    I know that the Trailblazers are always sharing tips on powerchair accessories so it might be worth posting a question in their facebook group also. You can join it here: https://www.facebook.com/groups/mdctrailblazers/

    Best wishes,
    Maddy
    Care, Information and Advocacy Manager

    Kyri Photiou
    Participant
    Posts: 0
    Joined: 12/09/2018
    #127468
    Reply To: Howdy everybody

    Hi Jon,

    Welcome to the forum!

    If you would like more information about LGMD or would like to get in touch with others who have the condition, the Care and Support team at Muscular Dystrophy UK can help :)

    There are lots of ways we can help so please do get in touch. Our helpline number is 08006526352 or you can email us on info@musculardystrophyuk.org

    Of course the community here in the lovely forum can help too!

    Best wishes,
    Maddy
    Care, Information and Advocacy Manager

    Kyri Photiou
    Participant
    Posts: 0
    Joined: 12/09/2018
    #126764
    Reply To: Hello everyone

    Hi Colin,

    Sorry to hear you didn’t have a great time with the doctors! Welcome to the forum.

    If you would like more information about IBM or would like to get in touch with others who have the condition, the Care and Support team at Muscular Dystrophy UK can help :)

    There are lots of ways we can help so please do get in touch. Our helpline number is 08006526352 or you can email us on info@musculardystrophyuk.org

    Of course the community here in the lovely forum can help too!

    Best wishes,
    Maddy
    Care, Information and Advocacy Manager

    Kyri Photiou
    Participant
    Posts: 0
    Joined: 12/09/2018
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