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Nemaline 6 myopathy

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  • October 20, 2020 at 5:36 pm #190303
    Nemaline 6 myopathy

    Hi all,
    my name is Anthea and I was diagnosed with a nemaline 6 myopathy a couple of years ago. It took a whole lifetime to get this diagnosis. I am now in my early 50s, my mother, sister, uncle and cousin have this disease but I am the only one who followed through to get this diagnosis.

    Is there anyone out there with a similar myopathy? I have recently moved back to the uk after a 25 year absence, and would like to connect with others.

    Many thanks
    Anthea

    Anthea
    Participant
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    Joined: 20/10/2020
    October 21, 2020 at 2:11 pm #190313
    Reply To: Nemaline 6 myopathy

    Hello and welcome Anthea and welcome back to the UK too. We have a very broad church of folk here so you may well find someone to get in contact with.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    October 21, 2020 at 4:24 pm #190315
    Reply To: Nemaline 6 myopathy

    Hi Anthea.

    :welcome:

    As Mike says, members with the same condition as you will hopefully see this and reply.

    There are a lot of crossovers between the different neuromuscular conditions so you may find others can help or relate on some level. There are a few Nemaline 6 Facebook groups as far as can see but none specifically based in UK (as far as I can tell).

    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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