Viewing 4 posts - 1 through 4 (of 4 total)
  • #181210
    Quick Hello

    Hi I am Hazel/Hillsong is my user name. I have Cmt 1a and I have been referred to this site as a resource to access help and support. Is there anyone else with Cmt or anyone in the north manchester area with neuro muscular condition. I am under the north west ventilation unit as I use bipap. Looking forward to making new friends on here too :ty:

    Hillsong
    Participant
    Posts: 0
    Joined: 20/09/2019
    #181256
    Reply To: Quick Hello

    :welcome: Hillsong!

    Glad you found us ok. We have other members on here with the same condition. Keep checking back for responses. I’ll see what we can do to help in some way to join you up with people.

    Have you ever been to your regional muscle group?

    I have a type of Congenital MD called Ullrich CMD (or Col VI). I have used bipap since I was 15 so know my way around all things ventilator so to speak. I understand the importance of joining up with others who have CMT but there can be crossovers within conditions and there may be health or daily living issues the rest of us can help with or chat about.

    Anyway, we are quite a friendly lot. The forum is what you need it to be.

    Be in touch.

    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
    #181304
    Reply To: Quick Hello

    Hi and welcome

    Ive used a Bi-pap since 1995

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #181374
    Reply To: Quick Hello

    Hi thanks for the welcome. Look forward to learning more about everyone x

    Hillsong
    Participant
    Posts: 0
    Joined: 20/09/2019
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