Deciding whether or not you will develop HD is possible through a simple blood test. The discovery of the gene that causes Huntington’s in 1993 made it possible to predict your future. Since HD runs in my family when I stumbled or dropped something the thought came to mind instantly, Am I getting the disease. It was as though I always had a monkey on my back. My husband and I chose not to have children because of the concern. A physician friend of mine knowing my family history approached me in 1993 when genetic testing was possible. He said, “I will draw the blood myself and notify you personally the results”. Of course, I knew it would be confidential but that wasn’t my primary concern.
I had reached my upper thirties and being I had not shown symptoms, I thought I had not inherited the disease. Afterall, my grandfather, mother and brother all showed signs of HD in their mid-thirties. But I never stopped experiencing thoughts of Huntington’s with every item I dropped and every time I lost my balance or stumbled. It appeared I would never be rid of these thoughts.
A few years passed and one day I was walking through the medical clinic and ran into one of my patients. Her husband was a talented pianist. I hadn’t seen him for over a year and noticed he had a strange gait and appeared frail. His involuntary movements reminded me of the symptoms of Huntington’s, but I thought to myself it must be something else. Afterall, he was in his 70’s. His wife came by my office later and explained he had been diagnosed with HD. She said he began to have difficulty playing his piano and they had no idea why he had involuntary movements. He knew very little about his relatives. He was now in his 70’s. I had no idea at the time about the elderly showing symptoms later in their life.
It was then, I began to research the disease and found that even though my relatives began showing symptoms in their mid-thirties there was a possibility I could show symptoms later. I telephoned my doctor and was counselled about being tested. I would find out once and for all whether I was carrying the gene. The genetic testing had to be done at the main hospital 60 miles away. I met my physician’s privately in his office. During the hour drive I thought of all the positive and negative reasons for not having the test. I hesitated in the parking lot. I was scared and anguished over how I would react once I knew for sure. This would be final! After the blood draw I sat in my car and cried. What had I done? I would know in two-three weeks.
I received the telephone call as planned. The doctor explained my CAG repeats were considered a negative test. It was such a relief but now I began to feel guilty. Why was I the lucky one while my brother suffered for years? Genetic testing is not for everyone. Counselling is recommended to decide whether or not the outcome is in your best interests. Can you handle knowing the results? Read more about my brother’s life in Homeward Journey, 2003 and A Marked Woman in 2015.