Life At Risk

The following article is my own personal story of being at risk. At the conclusion of the article, I will include some helpful links for you to research this topic further. While the story itself is personal in nature, I found that in researching this topic much of what I learned is truly right out of the books. I hope you find this gives you insight.

Everything on the outside looked the same but inside, everything had changed. The person I was before I learned that I was at risk was eluding me. Suddenly I was aware that the potential for my life to be affected by this genetic disease was at a solid 50/50 flip of the coin.

I am giving a somewhat prejudice viewpoint here. I was at risk for inheriting Huntington's disease for 4.5 years. I will acknowledge up front that we all respond to situations differently and no two of us are alike. I can only describe how it was for me.

I will never forget the telephone call that came to me one afternoon back in the fall of 1995. My mother had been acting peculiar for some time and my siblings and I were quite concerned. After literally dragging her to different doctors, we still had no diagnosis. I would only recently learn that it was a complete stranger whose comments would bring her to get additional help. This stranger asked my mom why she jerked her hands the way she did. That concerned her enough that she decided to see a neurologist who tested her for Huntington's disease.

It was during the above mentioned telephone call I received that I was given the news that my mother had tested positive for HD. I was given a diagnosis but it did not include a description of what HD was and what it meant for her and us. I would find that out myself in the middle of a public library.

The next day I stood in that library with a few books in hand. Sorting through the medical jargon, I began to see clearly just, what this diagnosis truly meant. I was heartbroken. I felt physically sick, numb, scared, full of questions without any answers, alone. It was there I learned that HD is incurable. I also learned that we her adult children were each at a 50/50 percent risk for inheriting this disease. This could also affect any children we had if we too carried the gene. It was painful realization to make anywhere let alone in the middle of that library.

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