Huntington's Disease Society of America
I am a 39 year old wife, mother, and high school counselor. I found out I was gene positive on December 5th, 2008. It is a day I will never forget because it answered the question I had been asking myself daily for several years, wondering which way my 50/50 chance would fall. Despite the news I received that day, I actually found much relief in the power of knowing.
My parents knew HD was in the family but thought my paternal grandfather was not affected. Eventually when my father was in his 50’s he started showing obvious signs and did test positive. I still remember the day I went with my mother and father to receive the news. I find comfort in knowledge and knew I would want to find out.
I have two sisters who needed to process this news. My one sister and I participated in genetic testing at the same facility, accompanying each other to our visits, even finding out the results on the same day. Fortunately her news was better than mine, she is gene negative. My other sister has chosen not to pursue that yet.
I am so grateful I know what lies ahead. Everyone will get something and I have the power to prepare. I feel that through the genetic testing, my family has gained acceptance for the disease. I am not afraid to share my story with others because I want people to know about HD. I speak to our high school AP Biology classes, I organize casual days at my school to raise money for HDSA, my husband and I participate in clinical trials at a Center for Excellence, and we have raised money for local Team Hope walks. We will continue our fight.
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