HD in Color - a Column by Tanita Allen

There is something unsettling about living with a disease that people seem to take more seriously when you are struggling than when you are doing well. I have lived with Huntington’s disease (HD) for more than a decade. During that time, I have learned how to manage my…

There is something powerful about standing in a room and telling the truth about what it means to live with Huntington’s disease (HD). Every time I share my story, I am reminded that advocacy is not just about speaking. It is about being seen, making space, and helping change…

Airports can bring out some of my most challenging Huntington’s disease symptoms. The noise, crowds, bright lights, rushing travelers, long security lines, changing gates, overhead announcements, and uncertainty can quickly become overwhelming. What looks like an ordinary travel day to someone else can feel like my nervous system is…

Living with Huntington’s disease (HD) has changed the way I think about the future. Before it became part of my life, planning ahead meant the usual things: career goals, travel, relationships, finances, and the kind of life I wanted to build. Now, future planning carries another layer. There are…

Living with Huntington’s disease has taught me many things, but one of the most important lessons has been learning how to stay present. When you live with a progressive illness, it’s easy for your mind to travel into a future that hasn’t happened yet. I call it “future tripping.”…

Some experiences stay with you long after you return home, and my recent trip to New Orleans for advocacy work was one of them. I arrived expecting to share my story, learn more about Huntington’s disease (HD), and connect with members of the HD community. What I experienced was…

Living with Huntington’s disease (HD) has taught me a great deal about healthcare, both the kind that makes you feel supported and the kind that leaves you questioning whether you were truly heard. As a Black woman living with HD, I have learned that being believed is not always…

There are moments when looking at my mother feels like looking into a future I am trying very hard not to fear. My mother lives in a nursing home now. She is unable to walk, wears adult undergarments, and depends on others for many of her daily needs. I am…

There is a particular kind of vulnerability that comes with telling someone you have Huntington’s disease (HD). It can happen in friendship, dating, or any new relationship where you are trying to decide how much of yourself to reveal and when. For me, disclosure has never felt…

I’ve never been completely comfortable with the pressure that comes with the theme of “starting over.” We’re often encouraged to treat a new month or year, a birthday, or even a simple Monday as an opportunity to become a better version of ourselves. We make resolutions, buy planners, create routines,…