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Help about proteines for Bethlem Myopathy?

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  • March 8, 2018 at 6:13 pm #155009
    Help about proteines for Bethlem Myopathy?

    Help about proteines?

    Hello everyone,

    I am 27 years old, and i have BM since age of 3. I can walk, but cant use stairs or get up from chair( I use table/desk with elbows to get up). I had the tetanus surgery since the 16 age, but i m back on fingers.
    I need help if someone use proteins, amino acids or creatine? Do they help? I practice every other day 30-45 min. I just started using whey protein and glutamin.

    Thank You,

    Ozymandias
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    Joined: 08/03/2018
    March 8, 2018 at 7:05 pm #155010
    Reply To: Help about proteines for Bethlem Myopathy?

    :welcome:

    i dont take anything so cant say either way.

    hopefully someone else visiting forum has input

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    March 8, 2018 at 10:18 pm #155011
    Reply To: Help about proteines for Bethlem Myopathy?

    I have Ullrich CMD which is the more severe end of the same spectrum as BM. I believe I have seen this discussed on a Facebook group before now.

    It’s called the Collagen VI Support Group. It’s worth asking there.

    Let me know if you are but on Facebook and I will ask for you.

    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
    March 10, 2018 at 2:43 pm #155038
    Reply To: Help about proteines for Bethlem Myopathy?

    thank you.

    Btw. i have brother(26age) with Ulrich he is in wheelchair from age 12.

    Ozymandias
    Participant
    Posts: 0
    Joined: 08/03/2018
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