HD in Color — Tanita Allen

Fatigue is one of those symptoms of Huntington’s disease (HD) that people may not see or fully understand. When someone looks at me, they may assume that because I am walking, talking, writing, traveling, or speaking publicly, I must feel fine. What they do not see is the amount…

When I first heard about the devastating earthquakes that happened in Venezuela on June 24, my heart immediately went out to the families trying to survive the aftermath. I thought about the fear, the confusion, the loss, and the uncertainty that come after such an unimaginable disaster. I also…

Living with Huntington’s disease (HD) can sometimes feel like carrying a weight that other people cannot see or fully understand. HD affects movement, thinking, emotions, communication, and independence. The symptoms can change from one day to the next, which makes it difficult to predict what kind of support a…

Traveling with Huntington’s disease requires more than packing a suitcase. It requires planning, patience, self-advocacy, and a deep understanding of my body. I love the idea of seeing new places, speaking at events, visiting loved ones, and saying yes to meaningful opportunities, but traveling while symptomatic means I…

One of the hardest parts of living with Huntington’s disease (HD) is realizing that the disease does not only affect movement. It can also affect emotions, reactions, patience, and the way the brain processes stress. Many people see HD through chorea, balance changes, or visible symptoms. But some of…

Before Huntington’s disease (HD) became part of my daily life, I thought legacy was something people created at the end of their lives. I thought it was about accomplishments, titles, money, degrees, or what people would say about you after you were gone. I thought legacy was distant, something…

Living with Huntington’s disease (HD) has taught me that food is not just about satisfying hunger. Food is energy. Food is stability. Food is comfort. And it is one of the ways I care for a body that is constantly working harder than most people realize. When people think…

As Huntington’s Disease Awareness Month comes to a close, my heart keeps returning to one word: gratitude. Huntington’s disease (HD) is serious. It can change the way a person moves, thinks, speaks, works, relates, and dreams. It can place an enormous weight on families long before symptoms even…

Every year during Huntington’s Disease Awareness Month in May, I think about what awareness really means. It’s not just wearing blue and purple, posting a graphic on social media, or repeating facts about CAG repeats, chorea, and genetics. Those things matter, but awareness has to grow legs and turn into…

While reflecting on Huntington’s Disease Awareness Month, I am reminded that advocacy isn’t something I do only on a stage, in a column, or at an awareness event. Advocacy shows up in every part of my life, including the moments when I’m simply trying to receive basic medical…

Editor’s note: This story includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com. While Huntington’s…