Erin Paterson is a writer and the author of Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community and All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.
I had chosen a seat towards the back of the conference room because I noticed the legendary Jimmy Pollard sitting there. I didn’t want to miss the chance to sit next to this Huntington’s disease (HD) advocate and all-around amazing person.
I was at the Help4HD conference in Detroit, Michigan. It was my first time attending an event like this on my own. In the years past, I wouldn’t have had …
An excerpt from Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community.
These days as my father’s Huntington’s disease progresses and I take on more and more, I have learned how quickly being a caregiver can consume my life. Yes, he is still living two hours away, and …
I spent the first three days sitting next to my dad’s hospital bed, watching his chest rise and fall slowly. He was asleep the majority of the time, fighting off something unknown. Anytime he moved, I jumped up from my chair and stood where he could see me just in case his eyes fluttered open for a split second. I wanted him to know that I was there, that I …
An excerpt from All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.
I had permanent black bags under my eyes from not sleeping properly. I never woke up feeling rested. I hit the snooze button three or four times every morning, prolonging the start of each day. One morning, four months after receiving my …
I was sitting in a cold hospital room next to my husband, anxiously clutching his hand. The genetic counselor across from us withdrew a piece of paper from a white envelope and placed it on the table. She knew we were anxious to hear the results, so she got right to the point.
“You have tested positive for the gene that causes Huntington’s disease (HD),” she said.
I didn’t say anything right …
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