Now that I know…

“Each of these stories offer retrospective accounts of the experience of predictive testing. This retrospective point of view allows the reader to understand how people looking back on the experience of predictive testing continue to assess the meaning  of their results.”

These stories are taken directly from a collection that was compiled and edited by Susan M Cox, PhD, in conjunction with the Huntington Society of Canada. The stories come from different sources including: a series of in-depth research interviews conducted by Dr. Cox with persons who proceeded with predictive testing in British Columbia in the mid 1990’s,  as well as those that were submitted in response to requests for personal perspectives on genetic testing from chapters of the Huntington Society of Canada. The material that is used and quoted in this section is taken verbatim from the collection, a complete version of which can be found here:

I won’t be ambushed

“I had the test in 1994, after my elderly mother was diagnosed with HD.

I wanted to have genetic testing and learn the results, mainly because of a general curiosity and a desire to learn whatever I can about myself and my life. I fear ignorance, not knowledge. I wanted to be able to inform my children whether they might also be at risk, so that they could decide whether or not to have their own tests, or plan families.”


“As a little boy, I remember my grandmother only as a figure confined to her bed, then a nursing home. She was sick, but specifics were never discussed. Four years after I married, on a family visit in 1979, I was told about the “family secret,” Huntington disease. No one must know — people will be fired from jobs; the family name will become synonymous with “crazy,” future prospects for the children will be non-existent. I remember my mother telling me that she did not have it. But I somehow instinctively knew she did.”


“Learning of an Inherited Disease. It has been almost a year since I learned that I’d inherited the abnormal gene that causes Huntington disease. In hindsight, I can say that if I’d known a year ago the way I was going to feel today, I probably wouldn’t have chosen to learn the results of the test. At the same time, I should also say that a year ago I would not have accepted an explanation of the risks-of-knowing.”

Sometimes I feel cheated

“There are seven children in my family, and I am the youngest. When I was younger and living at home, I think that me and my next oldest brother experienced the worst of my father’s behaviour. Having to deal with the mood swings is a very difficult thing to do, as well as watching somebody slowly rot away to nothing. I never had the same experiences as my older siblings.”

Never give up hoping….

“When my second child was born, my body jerked and twisted for three days. I felt a sense of dread overcome the joy of our healthy newborn. The movement lessened to twitches and grimaces, which I felt I was successfully masking. I watched in certainty as my father developed Huntington disease. I prayed for, “Just five more good years, please Lord,” and made sure we would have no more children.”