“When I was diagnosed as gene-positive for HD, just over ten years ago, there wasn’t anything promising on the horizon in terms of a cure. It has only been since new clinical trials were announced in the past few years that I have allowed myself to feel a tiny bit of hope, that maybe there will be a treatment on time for me. How is it possible to be hopeful for a cure while still remaining realistic and preparing for my future with the disease?
Even though I do not have any disease symptoms yet, genetic testing has completely changed my life. Living with the knowledge that my future includes HD is a huge challenge. It has only been with time that I have learned how to balance many opposing views.
With the plethora of genetic testing available these days (even the mail-in kits), it is so important for people to consider the impacts such tests might have on their lives. Quite often, there are unforeseen consequences that one can struggle to come to terms with for years to come.”
Erin Paterson is a writer and the author of All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.
She shares her story and discusses her KevinMD article, “A patient’s perspective on genetic testing.”
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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.
