A Family Tradition - a Column by Carlos Briceño

My wife, Jill, who is gene-positive with Huntington’s disease (HD), and I often talk about what we owe the future stewards of the healthcare system. It weighs on us as a family affected by a rare disease. When you spend a lot of time in doctors’ offices and waiting…

My wife, Jill, who is gene-positive with Huntington’s disease (HD), told me recently that she has to “pump herself up” to do almost anything now. It’s not just the big things, like medical appointments or social events, but also the simple, ordinary tasks that most people move through without…

My wife, Jill, talks about the future more than she used to. It’s not a conversation about vacations and retirement plans, but a quieter, heavier one that comes with being gene-positive for Huntington’s disease. Recently, she looked at me across our kitchen table and asked, “At what point does…

My wife, Jill, who is gene-positive with Huntington’s disease (HD), can be waiting in line at a grocery store, sitting on a park bench, or picking up a prescription, and the person next to her will start confessing something they’ve never said out loud before. They might talk about…

The first time I realized our kitchen had become a kind of care unit, I was standing by the sink watching my wife, Jill, pour iced tea. It was a quiet morning, the kind we used to move through without thinking. She reached for the pitcher, and her hand made…

Years ago, my wife, Jill, was at a party talking with a friend. The conversation turned personal, and her friend asked a difficult question. It was the kind of question people sometimes ask when they want to be reassured but are afraid to hear what someone who knows them well…

My wife, Jill, who is gene-positive with Huntington’s disease (HD), has always believed that if something matters to you, you should pay attention to the people in charge of it. Lately, that has meant watching U.S. lawmakers much more closely. As someone living with a rare disease, she sees…

For families affected by Huntington’s disease, some courtroom trials — especially those involving a defendant’s deteriorating mental health — are impossible to watch without feeling the weight of the tragedy at their center. The recent Lindsay Clancy trial is one example. Clancy was a nurse from Massachusetts whose…

I never met Dolly Parton, but like millions of others, I felt like I knew her. It’s easy to feel this way because of her music, laughter, generosity, the stories she told, and the remarkable way she seemed to make room for everyone. She was successful, wealthy, and larger than…

Imagine anger residing at one end of your home and autonomy at the other, with Huntington’s disease (HD) sitting right in the middle. Before my wife, Jill, found out eight years ago that she is gene-positive with HD, she could usually tell when she was becoming irritated. She…