Huntington's Disease Society of America
My name is Susan and I live in Frisco, Texas. Until recently, there was no known history of Huntington’s disease in my family. In June of 2011 after a series of tests (including DNA testing to measure CAG repeats), my dad was diagnosed with HD. Upon learning this devastating news, my sister and I began searching for information about the disease, as well as support. Quickly, we connected with the online HD community on Facebook through the HDSA Advocacy group. We were able to learn much more about the disease not only from academic literature we discovered, but from real people who were living with the disease every day. Six months to the day after my father’s diagnosis, my sister tested positive for it as well. Her children are living at risk and have not yet been tested. In June of 2012, my husband and I attended the HDSA Convention for the first time in Las Vegas, thanks to a scholarship I received from Lundbeck and the HDSA. We were able to extend connections we had made online. Recently, in January, I tested negative for Huntington’s disease. While I am grateful that I am gene-negative, I will continue the fight to help those affected by the disease and their families.