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The perception of time is impaired in people with symptomatic Huntington’s disease in its early stages — but not in patients without symptoms, a study revealed. These findings suggest that time perception impairment may be used as a clinical tool for assessing those with the neurodegenerative disorder, the scientists…

What happens when you mix the following events together: the war in Ukraine, climate change, rising gas prices, supply chain issues, and a pandemic? It’s a recipe for a rising tide of anxiety. Scroll through social media or peruse any of the major news outlets, and the steady drumbeat…

As everyone who reads this column knows, Huntington’s disease (HD) is a devastating illness for those who test positive on a genetic test. But it can be equally terrible for family members who test negative. I’m referring to survivor’s guilt, which happens when someone feels guilty for surviving a…

Recently, my mother-in-law invited her daughter, Jill, to be part of a Zoom call with a Huntington’s disease (HD) support group she belongs to. One of the guest speakers was Patty Conlon, a clinical research coordinator at the University of Pittsburgh Medical Center’s (UPMC) Department of Neurology. Conlon…

Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…

Years ago, my wife, Jill, changed her approach to life. As she tells the story, she went from being an angry young woman to appreciating every second she spends on this earth. She was diagnosed with Huntington’s disease in 2018, but her transformation started years earlier. Jill had our…

Whenever I share that my wife and daughter are both gene-positive for Huntington’s disease (HD), I usually have to explain what the terminal illness is — “Imagine combining Alzheimer’s, Parkinson’s, and ALS in one disease” — and what will happen to them if a cure isn’t found in…

Earlier this month, my wife and daughter, Jill and Alexus, respectively, participated in a panel discussion about Huntington’s disease (HD). The topic was difficult conversations. Jill and Alexus are both gene-positive for HD, but they each had different reasons for accepting the invitation to participate. Alexus said, “I love talking…

For the past two years, in honor of Valentine’s Day, I have written a love letter in this space to my wife, Jill, who has Huntington’s disease. This year, instead of a Valentine’s Day letter, I’ve decided to write her a love play. It goes like this: [Carlos makes a…

My daughter, Alexus, recently spent about a month with my wife, Jill, and me, and the more time she visits with us, the sadder we get when she leaves. The weekend that she left, Jill and I moped. To divert our attention, we decided to go to a movie…