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Anyone...Huntington's Disease?

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Anyone...Huntington's Disease?

Postby cJo » Wed Jul 19, 2006 6:08 am

Hi~

There are about 4~5 posts in the Huntington's forum all together. I thought I would post to try to surface it. There are so many forum topics here, it is great but some of them get lost.(also are rare)

Well I am a 40 yr. old female. My family consisted of Mom, Dad and Sis. Mom died with HD when I was 19 (she was 43). My father died in 2000 afte caring for my sister who also had HD. My sister died with HD in 2002 (also at age 43). Coinsidentally (I guess) my grandfather also died at age 43. He had HD but he committed suicide.
So now there is no immediate family left at all. I am not married, no kids.
Anyone else here have any experiences about HD they would like to share?

cJo
cJo
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Postby butterflykisses8 » Sat Jun 02, 2007 6:27 pm

Hello,

I have Huntington Disease in my family. My grandfather had it and died in 1970. My grandfather and grandmother had six girls. They were told that only boys get HD. AS their girls got older they had their familys and then found out that both sex can get HD. One at a time they start getting the disease. Jean died in 1985, Maxine in1990 something, then my mom and Polly after her. Only two girls didn't get it.

Jean had 6 kids - 5 out of six got it

Maxine had 5 kids- at least 2 out of the 5 but we have not seen them in some time. Not sure on the other.

Polly had two kids- one gone from Aids and the other we think he was it.

My mom JoAnn had 3 kids and so far two- I don't know yet if I have it.


My big family has become a small family and by the time I am in my 40s I think I might be all alone. I am the youngest of the family.

My cousins are dieing with HD and their kids are getting HD now.

We HD families need to stick together. If any one wouldn't mind I need some one to talk to some days. I will be checking this post site.
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Postby Hanan - Hannan - Hannon » Tue Aug 28, 2007 4:23 am

Hello, I have lived "at risk" with Huntington's for 60 + years. This disease runs in my paternal family line. The first we had learned of Huntington's was in the 1950's when a letter was written to the Mental Hospital regarding the institutionalization of my Grandfather in 1928. It was through them that my parents learned of Huntington's Chorea, as it was known then. One of my fathers older brothers was showing symptoms of some kind of disorder and they didn't know what was wrong. It was learned that.......

"He, My Grandfather, suffered from Huntingtons Chorea, a kind of chronic St. Vitus' Dance, inherited in the direct family line, parents to children, the symptoms gradually developing in middle life, and always progressing to complete disability and mental deterioration."

What a frightening discovery. This was the "Skeleton in the Closet" so to speak as no one knew, or wanted to talk about it. Over the years, Uncle Roy's illness progressed. I remember at the age of about 15 or 16 being told by one of his Drs. that in order to stop the disease, it would be best not to have children. Of course at that age you are fearless and nothing like that would happen.

Over the years others of my Dad's family members inherited the disease, some commiting suicide, others being commited to the hospital. My Dad was the youngest of 13 children and still had not showed any signs of inheriting HD. I grew up, married and do have two beautiful children, whom I love and adore very much. Was I scared? Yes at times. Was I selfish? Probably so. Did I make a major error in my life? No. Will Dad or myself inherit this horrible disease? Did I pass the gene onto my children? All these questions and more run through your mind. Oh yeah and the time you lose your balance or bounce off the wall while walking down the hall. Is it just being clumsy or is it HD? The testing for HD was not out yet so that wasn't even a factor for me. Even if it was I don't believe that I would have had the courage to be tested. Dad always had a good outlook toward this, "If I get it... I get it." So I guess I sort of adopted his attitude. Daddy never did show any signs of HD. He died of Cancer in his late 60's. I have no signs of HD and I believe that the gene has stopped in my line. I "Thank God" for that. I just want you to know that I wouldn't have missed all these years with my wonderful children and grandchildren for anything. They are a gift and a blessing. I am not showing signs of HD so I believe I am "risk free" at this age. I am glad that I went ahead and lived my life, so they could be. My heart goes out to those who have inherited HD and to their caregivers.

At this time....... I believe there are five of my Dad's brothers & sisters who have inherited HD. Of these five there are seven first cousins known to have inherited HD. Dad was the baby of his family, and I am an only child.

I know that this is rambling but.............I wanted to let you know that life and joy does continue, and you are not alone.

A good book to read regarding HD is titled "Mapping Fate" by Alice Wexler

"In Mapping Fate, Alice Wesler tells the story of a family at risk for a hereditary, incurable, fatal disorder, Huntington's disease, once called Huntington's chorea. That her mother died of the disease, that her own chance of inheriting it was fifty-fifty, that her sister and father directed much of the extraordinary biomedical research to find the gene and cure, make Wexler's story both astonishingly intimate and scientifically compelling."

I am interested in Genealogy and have tried to trace the family line back, but can get no further than Grandpa Frank Hanan, Hannan, Hannon. While there is still no cure, many strides have been made in HD since we first learned of it.

As my Granddaughter would say,
Much Love and Peace
Hanan - Hannan - Hannon
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