HD in Color — Tanita Allen

My journey with invisible muscle movements known as chorea began in 2010, before I knew that Huntington’s disease was part of my story. It started with subtle, writhing movements in my toes. At first, the movements seemed small and easy to dismiss. I didn’t understand why they were happening,…

Sleep is supposed to restore the body and mind, but living with Huntington’s disease (HD) can make getting a peaceful night of rest more complicated. HD doesn’t stop affecting me simply because I get into bed. Involuntary movements, restlessness, anxiety, racing thoughts, medication effects, and changes within the…

Planning for the future while living with Huntington’s disease (HD) requires me to hold two truths at the same time. I understand that HD is progressive, and that my needs may change. I also believe that my future can still contain purpose, joy, growth, relationships, and meaningful work. Hope…

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…