According to an article from BBC News, Jackie Harrison had a daunting choice to make. There was a fifty percent chance that she would contract Huntington’s disease, a rare condition that has claimed the lives of many of her close family members, including her uncle, mother, and grandfather.
All she had to do to find out if she had the disease would be to take a diagnostic test, but the potential result could be devastating news. Huntington’s is a genetically linked condition that causes brain cells to die. Currently, there is no cure for the disease. Symptoms usually begin with mood problems and subtle changes in personality. As the disease progresses, physical symptoms appear, such as random, jerking movement, unusual stance and gait while standing, and general stiffness. Often these physical problems are the first noticeable symptom, as early changes to mood and cognition are often subtle enough to go unnoticed. Later, patients have trouble swallowing, chewing, and speaking, and develop dementia. Most people die about fifteen to twenty years after their initial diagnosis. To learn more about this disease, click here.
Jackie planned to become a teacher, but the burden of Huntington’s has stolen that dream from her, at least for now. This is because her brother Mark also developed the disease, and Jackie has spent the last decade of her life taking care of him. Jackie lived in fear, wondering if the disease will come for her next. With every foul mood or random twitch, she was forced to question if the disease had already begun.
There is no medical necessity to take the test, since early treatment would have no effect on the disease’s fatal prognosis. As with many other rare conditions, there is a culture of stigma around Huntington’s disease. In the past, families with the disease were considered to be cursed. Jackie also recalls many memories from her childhood of her mother’s struggle with physical symptoms, and how her social life was gradually destroyed when she began to develop twitches and tremors.
Jackie won the genetic lottery this time: her test came back negative, so she will not develop Huntington’s. Choosing to take the test was a risky move, but now the specter of the disease no longer looms over her. To learn more about Huntington’s disease and the support community for this disease, check out the website of the Huntington’s Disease Society of America. The society is celebrating its fiftieth year of service and support for those with the condition.
