HD in Color — Tanita Allen

Anger is one of the most misunderstood and quickly judged symptoms of Huntington’s disease. When people hear the word “anger,” they often picture a personality flaw. They might assume it’s an attitude problem, a character issue, or a choice. Rarely do they consider neurodegeneration or other shifts…

January is loud. It shows up with fireworks, fresh calendars, and the not-so-subtle message that you should reinvent yourself by Monday. There’s a whole culture built around before-and-after photos and big declarations, as if being human is a project you can complete with enough discipline. Living with Huntington’s disease…

There’s a moment many Huntington’s disease (HD) caregivers can describe with uncomfortable clarity: the day you realize you’re not just helping anymore — you’re holding everything together. At first, it looks like small adjustments. You drive to appointments. You repeat yourself a little more often. You quietly take over…

People often associate Huntington’s disease (HD) with movement symptoms like chorea, fidgeting, and unsteadiness. But the truth is that many of the most life-altering symptoms of HD don’t occur in the muscles at all. They happen quietly inside the mind. And because these changes aren’t always visible, they’re…

The holidays have a way of magnifying everything: joy, grief, gratitude, exhaustion, hope, and the quiet ache of what we wish life still looked like. For most people, this time of year is about traditions, gatherings, and the excitement of closing one year and welcoming another. But for those of…

Preparing for future care is one of the most intimate, emotional undertakings of the Huntington’s disease (HD) journey. It requires looking ahead to a time we may not feel ready to imagine, while still holding on to the life we’re living now. But no one prepares for this alone.

When most people picture Huntington’s disease (HD), they imagine the outward signs — the chorea, the unsteady walk, the tremors. And while those symptoms are real, they’re only a small part of the HD experience. The truth is, many aspects of this disease can’t be seen by others, yet…

Today, on Thanksgiving, I find myself reflecting on what has truly sustained me this year, not just physically, but also emotionally and spiritually. The answer always circles back to one thing: the Huntington’s disease (HD) community. This beautiful, resilient, imperfectly perfect family has given me a sense of belonging…

For most of my life, I wore exhaustion like a badge of honor. If I wasn’t busy, I felt behind. I learned early on that to be seen as capable, especially as a Black woman, I had to show strength at all times, no matter how depleted I felt inside.

As the holidays draw near, I find myself glancing at the table and noticing what’s missing: There’s an empty seat where a loved one once sat. Grief takes on a unique shape in the Huntington’s disease community. It’s not just about death; it’s about watching pieces of someone you…

When I was diagnosed with Huntington’s disease (HD), I thought the hardest part would be the symptoms: the involuntary movements, the mood changes, the balance issues, the unpredictable fatigue. But I learned quickly that the stigma surrounding a rare disease can weigh just as heavily. The stares, the whispers,…