Huntingtons disease?

[Brandi]

My 18 year old niece just got diagnosed with this. She was falling for no reason. They have been testing her which seems like for months now.
This is awful for my sister in law. She and her dh tried to get pregnant for a long time, then they did and my nephew was born with tourettes.

So they stopped trying to have more kids and adopted my niece when she was a new born in hopes of having a normal child. They are such great parents to both thier kids! It is sad that this has happend. Does anyone know or have this that they can give me a little insite?

I have looked up stuff on line. She has probably had this for years and we chaulked it up to her being a teenager. I feel so bad for my sister in law and her dh. they have already had it so hard for so many years with my nephew. please send good thoughts their way they could really use it!

[VeloVT]

Am I thinking of the right disease -- is Huntington's a hereditary degenerative nervous system disease, symptoms don't usually start until the patient is middle aged but then deterioration is rapid? If this is the right illness -- there was a long & good feature about it several weeks ago in the NY Times, following the story of a young woman (about your niece's age actually) who was at risk for developing the illness due to family history, and elected to have genetic testing to determine if she had it. Turns out she did (or will), and she is now working hard to raise the visibility of the illness, and advocating on behalf of those diagnosed with it. You might try searching for the story on the Times' website...

Good luck to all of you. I'm sure this is a very emotional time.

[mimitabby]

Huntington's Chorea? Yeah, that's bad and hereditary. I have never heard of people that young with symptoms. I am sorry to hear it.

[Brandi]

Yea my neice has the juvenile form of it. And it is genetic.
I will go look up and see if I can fing the story, thank you for letting me know. It is very rare what she has at least for her age it is. Thank you for the warm wishes as well.

[Wahine]

Sending out good thoughts. Huntingtons is a terrible disease.

[Brandi]

Liza,
I just read the NY times article. Wow! I am beside myself for my niece right now. She is so young to have this. This is not going to be good or easy. Now that I realize all she will not be able to have or do. They say when it comes on young like this it is just a mtter of time. and there is not a lot of medicine to help it either. She can't have kids or might not even get married. Who wants to marry someone who is going to go insane basically. I am sad! My poor in-laws!
But thank you for telling me about the article it has made me more aware. I feel I should look into fund raising and what not to see if I can do anything.