dynactin mutation

I am looking for anyone who has or know anyone with a genetic condition called dynactin mutation.My granny,mum,aunt,uncle, and myself all have a tracheostomy and my aunt,uncle and myself have muscle and nerve problems.My brother has just been diagnosed and needs a trachoestomy. I have a twitch in my face and my hands have a shake and my legs jerk.I am in alot of pain and am looking a support group we have been told that the illness is related to motor neurone but its a slower illness

1 Reply

  • Hi barbs 67

    I am sorry to hear about your illness. It sounds a tough one.

    I don't know anything of this disorder

    See link: Would this be a good place to ask?

    They have a forum.


    Maybe someone else here can help more.

    Wishing you the best


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