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Huntington's disease

Mary Bobrofsky

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Hi Cindy, It is so hard to find out information on HD. A lot of doctors are not educated. I've found that you have to do most of the research yourself. I have HD and my father had it. There have been 10 people so far in my family since my grandfather who have had it. If you contact your local Huntington's Support Group they may have a (Huntington's Physicians Guide)which is the best source of information you can find for you and your doctors. I did most of my research on the internet and found a lot of information and made a lot of friends. My symptoms are depression, terrible insomnia and anxiety. I am very tempermental sometimes too. My father had the same symptoms. My grandfather and uncles had chorea (which is the shaking). Juvenile Huntingtons isn't as common as adult onset. Children with HD are usually very ridged. They have a hard time in school and may have a bad temper. Getting tested for HD is a hard decision. People don't usually get tested until they are sick for a long time. There is no cure so a lot of people prefer to live their lives "business as usual" until something happens. The odds are 50/50 that your children will get HD. It's like a toss of the coin. Sometimes entire families (as in my case) get HD. Other times maybe just one or two. It never skips a generation. It is always passed on. I hope this helps you without scaring you. I've been involved with HD for a long time. Feel free to write if you have any concerns. Mary
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