CMT:

CMT1A is a rare (1:5,000) hereditary motor and sensory demyelinating peripheral neuropathy (also known as Hereditary Motor and Sensory Neuropathy, HMSN) which is caused by an intrachromosomal duplication and consecutive toxic overexpression of the PMP22 gene on chromosome 17. CMT1A is one of the most common inherited peripheral nerve-related disorders which is passed down through families in an autosomal dominant fashion. CMT1A disease becomes evident in young adulthood and slowly progresses with distally pronounced muscle weakness and numbness. Pain can range from mild to severe. The disease can be highly debilitating with patients becoming wheel chair-bound and is often accompanied by severe cases of neurological pain. There is no known cure for this incapacitating disease.

Monday, August 18, 2014

Stander!!!!!

 I was giver this stander by my dear friend Misty. Brandon helped me get into the stander and then he strapped me in. It was extremely exciting to stand by myself and to have Brandon not helping me, he just got to look and watch me stand! So this experience was amazing but after just a minute or two I started getting light headed just because I have not stood in so long and my head was adjusting to being so high. Also after a few minutes of being in the stander I started to get extreme nerve pain shooting down my leg and into my feet it was very painful and for my first time being in the stander we didn't want to push it, so after 5 minutes I got out of the stander. With my disease you have to be very careful, you can't push to much or to little, this disease reacts badly to to little or to much so it will make this physical therapy journey more difficult but I am here and ready to go for it no matter what! I will be doing physical therapy once a week!
Posted by at

6 comments:

  1. AnonymousAugust 20, 2014 at 1:46 AM

    Dear Tya!

    I follow your fight against CMT and I´m full of hope and confidence...I wish you and your family the best,
    with love,
    Ema, also fighting...

    ReplyDelete
  2. Tya Fighting Against CMTAugust 20, 2014 at 2:26 PM

    Thank you so much!!!!!!

    ReplyDelete
  3. UnknownAugust 20, 2014 at 7:32 PM

    I just started following type YouTube videos. I too have cmt type 1A. I hope we can swap stories about it disease and maybe give each other support.

    ReplyDelete
  4. UnknownSeptember 11, 2014 at 7:38 PM

    Wishing you much success Tya :) You are a strong woman!

    ReplyDelete

Subscribe to: Post Comments (Atom)