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
dynactin mutation: I am looking for anyone... - PSP Association
dynactin mutation
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barbs67
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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.
forum.mndassociation.org/ac...
Maybe someone else here can help more.
Wishing you the best
Kevin