My mother was diagnosed with HD in 1996. She was the first in our family to be diagnosed.
Some time after our mother's diagnosis, me and my three siblings went to the genetics clinic. There were nice people who seemed to understand a delicate and complex situation, where there is a hereditary disease in the family and the risk of inheritance is 50%. At the clinic, the family tree was filled in and we got information about the possibility of a genetic test. As we learned more about the disease, it turned out that it was very likely that my grandfather had also had Huntington’s disease, but at that time, it was not yet possible to diagnose it.
A year after, when I was 24 years old, me and my sister went to get the genetic test. I didn’t think my decision to get tested long enough or had the slighted idea what consequences the result could have in one’s life.
We had to wait for the result for many weeks. We were advised to take with us a friend or a spouse (other than a sibling) when getting the results. I cried the whole night before. I went there with my boyfriend. When the doctor said the result was “negative”, I didn’t understand what it meant.
My sister went a couple of days after me with a friend of her. We knew the time when she was supposed to have the appointment. The day passed and we heard nothing of her. Eventually we reached the friend who was there with her. She told us that my sister had vomited right after stepping out of the hospital door. Her test came out positive.
My other two siblings had children already at the time of the diagnosis of our mother. I believe it influenced their decision not to get tested. My sister who was tested positive, gave us the impression that everything was fine and that she was ok with the result. In retrospect, I believe she felt herself very lonely.
Among us siblings, were able to discuss the illness and care of our mother quite well, but clearly the situation in our generation and individual decisions on testing were too difficult topics to discuss. Some of us wanted to completely rule out the idea of their own risk, while I found it difficult to rejoice in my own status when my sister had tested positive.
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