Columns

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…

Two weekends ago, my wife, Jill, and I said goodbye to our daughter, Alexus, son-in-law, René, and their cats as they headed back home to Boston. Because remote work is now common during the pandemic, Alexus and her husband were able to spend December and early January with us…

It’s not often that I see my wife, Jill, cry. She says crying makes her feel worse. As a result, she doesn’t stay sad for long and rarely sheds tears. She’s able to compartmentalize her emotions, and is usually levelheaded and pragmatic when talking about them. When the doctor delivered…

Family has always been important to my wife, Jill. However, she wouldn’t plan many trips due to concerns about travel costs. Jill’s attitude shifted after she tested positive for Huntington’s disease in 2018. She saw every long holiday weekend as an opportunity to visit our loved ones. Because our…

In many previous columns, I’ve shared the statistic that only about 10% of those at risk for Huntington’s disease (HD) have chosen to get predictive genetic testing. This is a brave decision for the few in this small slice of the HD pie, considering that there aren’t…