It’s been weeks since the news broke of UniQure’s trial successfully slowing the progression of HD, and I still find myself breaking down in tears. I have been going about my life, doing the groceries, going to the gym, cleaning the house, and the tears keep coming unexpectedly. I am happy about the news, but that is not how it feels in my body. I have come to realize …
A Huntington’s trial brings hope and grief
I recently attended a medical conference for the Huntington’s disease (HD) community. Hundreds of people were gathered to collaborate, share knowledge, and learn how to better address the needs of their patients. During the first session, I found it challenging to listen to the presentation and the conversations taking place around me. The detached manner in which people were speaking was troubling to me, so I stepped out for a …
Why the words doctors use matter more than they think
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 …
Embracing the Huntington’s disease community
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 …
The heartbreaking realities of being a caregiver with Huntington’s disease
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 …
Advocating for a sick parent by confronting physician bias
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 …
The emotional side of genetic testing
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 …
A patient’s perspective on genetic testing
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