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I am gene positive. It took me a long time to be able to say that out loud. For the longest time I wanted to keep it secret. I didn’t want Huntington’s disease to define who I am. It’s been a little over four years since my test and I have accepted HD as part of me but I don’t let it define me instead I define it.
My grandfather got sick with Huntington’s when I was a little girl. We didn’t know what was wrong with him until I was 16. My grandfather suffered terribly and was treated terribly. My father couldn’t handle going thru the same thing and so he took his life shortly after we found out what my grandpa had.
I remember finding out that I had a 50% chance of having the disease. I wanted to get tested right away. I didn’t because this was before GINA and there were no laws to protect people with genetic diseases. I waited 9 years to get tested. I thought it would be an easy decision but it wasn’t. And I didn’t know that it would change my life and change the person I am.
Huntington’s is a very lonely disease for those who have it, those who are at risk and those in families affected. I have felt that loneliness for years and after I started to attend my local support group I realized that I wasn’t alone. It is now my life mission to help other people going thru the same thing I did. I don’t want anyone to ever feel what I felt. If we all stick together I truly believe we can achieve that.