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,…
When I stepped off the plane in Boston, I felt a wave of gratitude. Everything about this trip felt first class, from the thoughtful arrangements to the sense that every moment had purpose. I had been invited to speak at Wave Life Sciences, a biotechnology company devoted to advancing…
Walking into the same lecture hall at Case Western Reserve University where I spoke last October felt like déjà vu in the best way. The rows of white-coated medical students, about 200 this time, buzzed with that unmistakable energy of first-year enthusiasm. Their notebooks were open, laptops glowing, faces eager…
October feels like a month that breathes differently. The air turns cooler, the light softens, and the energy shifts from summer’s urgency to something gentler. Trees let go of their leaves without hurry, the days shorten, and a stillness settles in. For me, living with Huntington’s disease, that stillness…
Some days, the world feels too far away, too cold, or simply too heavy to face. With Huntington’s disease, those days come more often than they used to. Sometimes it’s because my balance feels off, and icy sidewalks feel risky. Other times, my movements are unpredictable, and I’m not…
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