Most people do not know anything about Huntington’s disease and the relatively small number of people it affects, approximately 30,000 are symptomatic and approximately 200,000 live at risk in the U.S. With that said, it still amazes me the connections I have made with strangers because of this disease.
A few months ago, a friend of mine was reading her favorite columnist’s article in our local newspaper, when the writer mentioned that her grandmother had Huntington’s disease. My friend immediately emailed me the information. In turn, I contacted the columnist and asked her to write a story about our journey as an HD family. She graciously accepted and we made a date to meet. A picture and the article was run in the Auburn Journal on Sept. 12, 2016. To this day, we still have people around town tell us they saw the article and how sorry they were for our losses. http://www.auburnjournal.com/article/9/12/16/auburn-residents-learn-how-live-unknown-huntingtons-disease#.WCz738qVwDg.email
I truly believe we learn through stories. When I was working and visiting patients, hospice and Lifeline, listening to their stories was an honor and it gave them so much joy to share it. Sharing stories passes on wisdom from one generation to another and, at the same time, it validates our lives. And who doesn’t want their lives validated? It’s proof that our life had meaning, that we made a difference and contributed to the world.
The point to this blog is, we all have a story that others can learn from especially if you live in the HD world. I hope to encourage HD families, individuals to write their stories in blogs, in newspapers, magazines, newsletters to educate the world about the challenges we live with day in and day out. Our voices need to be heard, even when it is painful, because once heard, it validates our struggle, our journey, our story.
Writing my story, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, was not always easy but now that it’s complete, Lora, Marcia and Cindy have been honored and I have told a story that no one has every heard before.
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