What Your Donation Means
Updated: Jan 12
It’s been over two years since I tested positive for Huntington’s Disease, and I worry that every time I can’t find my keys, lose my balance getting out of the shower, or see my hand twitch, that it might be the start of symptoms. When I called for the info on testing, they told me the price and said that it was so high because they didn’t have funding to help with it. They have to do psychological testing to make sure that you won’t commit suicide if you have it (because a lot of people did after they first started the genetic testing). When I walked into the Huntington’s research facility to get tested, I was able to quickly eye up the very tiny space. The walls were filled with old grey filing cabinets and stacks of random file boxes, and the administrative assistant sat in the middle of a makeshift cubicle. We sat in broken chairs while we waited for the family before us to get their results. We heard their bad news just after they did because the offices weren’t big enough to hold their whole family. I was devastated for them and terrified for myself. The doctor invited us in while the social worker attempted to calm the fears of the other family. He didn’t shake my hand or even look me in the eye. He said, “I don’t want to beat around the bush. You have it,” and handed me a piece of paper with the positive result. Too many CAG repeats on my 4th chromosome (45 to be exact) to be normal. He asked me if I wanted to start in any of their research studies. I said I needed to process this first, and we left. I haven’t been back. I’m sharing this story because of the serious lack of funding for research, and that’s why I feel the need to participate in the walk to raise money for the Hungtinton’s Disease Society of America. I hope the story tugs at your purse strings…I mean, heartstrings.