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Bethlem myopathy

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  • February 27, 2018 at 3:57 pm #154864
    Bethlem myopathy

    Hi, i was diagnosed with Bethlem myopathy 2 years ago.
    I just wanted to find someone to talk to with this disease.
    Is there anyone here?

    Andrey
    Participant
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    Joined: 27/02/2018
    July 18, 2018 at 3:32 pm #159890
    Reply To: Bethlem myopathy

    i have had bethlem for a loooooong time :lol: tony

    elpirata elpirata
    Participant
    Posts: 3
    Joined: 14/01/2013
    November 13, 2018 at 7:06 pm #163816
    Reply To: Bethlem myopathy

    Can you send your facebook page link so i can get in contact with you?

    Andrey
    Participant
    Posts: 0
    Joined: 27/02/2018
    November 17, 2018 at 5:09 pm #163905
    Reply To: Bethlem myopathy

    Hi Andrey

    I have UCMD which is on the same spectrum as Bethlem.
    There is a group which is an off shoot of Cure CMD which is specifically for those of us with Collagen VI muscle disorders. We are not able to offer a private message service on here unfortunately but if you were to join that group there are lots of folk who would welcome you, including myself.

    Collagen VI Support Group

    Hope to see you on there!

    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
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    Joined: 05/03/2015
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