No need to know

“I never considered predictive testing was for myself or my family. Yes, Huntington is alive and well in my family history — that is, my grandfather, two great-aunts, one great-uncle, my father and my aunt — but fortunately the debilitating effects of the disease do not appear until approximately age 55 or later. At the initial availability of predictive testing, I was already married and had two small children. We felt and still feel no need to know what the future may hold. I cannot imagine trading a life with kids for one without. I only pray that before my father dies, before myself or my brother, or before my children or my niece and nephew are diagnosed, that there will be a control or cure for Huntington’s. I cannot think that either knowing I have or have not inherited the gene for Huntington’s would change the way we live and are raising our children. My father and mother do not have the quality of life one would like to think a retired couple in their late 60’s deserve, however, they still enjoy following their grandchildren’s activities, church fellowship, curling games and the like. Huntington’s is not the only debilitating condition one can suffer with. Perhaps, as my children become adults, they may feel the need for predictive testing and more definite information. Perhaps, a cure is on the horizon.”

‘Predictive testing is not for everyone. Although it is sometimes assumed that the majority of persons at risk for HD have had predictive testing, it is only about 10% of persons at risk who have actually decided to have the test.’