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vdejaco66 karma

It probably got buried but im the girl at 50% chance of having a similar but very rare disorder. And I don't know if this affected you as much as it did me seeing as I'm female and you're male, but given my disease is more common in women I didn't really get to ask.

  1. Does being diagnosed change you ideas toward marriage? (As in are you more inclined to get married knowing that you might not be able to take care of yourself)
  2. Do you worry about your sisters possibly not having someone to take care of them if they fall ill to the disease?

vdejaco18 karma

This will probably get buried, but I know how you feel and I'm actually finding out (within the next month hopefully) if I am going to be in the same situation. My possible disease is different. It's called SCA8 ataxia and, unlike Huntingtons, pretty much no one has it which is scary because it means there's less people researching it and increases the likelihood that there won't be a cure in 10 years when the disease would take effect for me. It's neurodegenerative as well and it also is one of the first diseases discovered that is coded for using an codon other than AUG. Symptoms begin in the 30's and affect speech and muscle coordination first and then lead to dementia.

Know that you have hope! You have a 10% chance of not having penetrance! But even if you do have penetrance, we still can live our lives and be happy. Both my aunt and grandma have it and they live happy lives.

vdejaco9 karma

what's even worse is when you think about it...because their mother isn't jewish...they actually aren't even jewish....