Dear past me, I know you’re scared. I know your hands are trembling, not just from the involuntary movements beginning in your fingers, but from everything this diagnosis means. Huntington’s disease. You heard the words, but your brain hasn’t fully let them in yet. You’re still sitting in…
I’ve stood in front of classrooms filled with bright-eyed medical students in their freshly pressed white coats, ready to learn the clinical details of Huntington’s disease. They take notes, nod along, and ask technical questions. But when I begin to speak not from a textbook but from lived experience,…
When people find out I have Huntington’s disease, there’s often a long pause, followed by a look I’ve come to recognize all too well: pity. Their eyebrows crease. Their voices drop an octave. They fumble for comforting words that often make me feel anything but comforted: “I’m so sorry.”…
Kasia Rothenberg, MD, PhD, is my neuropsychiatrist and one of the most compassionate, skilled providers I’ve had on my care team since being diagnosed with Huntington’s disease (HD). I am proud to share her wisdom with the broader Huntington’s community in this special interview. Rothenberg is the co-director…
For those of us living with Huntington’s disease, the idea of calm can sometimes feel like a distant dream. Between the unpredictable nature of our symptoms, the emotional toll of navigating a complex diagnosis, and the misunderstandings we often face from the outside world, finding even a moment of…
When you live with Huntington’s disease, your world begins to shift in ways you never imagined. Things that once felt routine, such as tying your shoes, remembering appointments, or going for a walk, can suddenly feel like climbing a mountain. For many of us in the Huntington’s community, these…
One of the most common questions I hear as someone living with Huntington’s disease (HD) is, “Where do you get your medical care?” I always smile and say, “At the Huntington’s Disease Society of America Center of Excellence at the Cleveland Clinic,” because I’m genuinely grateful to be under…
Mornings with Huntington’s disease can feel unpredictable. Some days I wake up with energy and clarity. Other days, fatigue or chorea greets me before I even reach for the light switch. There was a time when these inconsistencies left me feeling defeated before the day began. But over time,…
When I first heard the words “Huntington’s disease,” it felt like the ground beneath me gave way. There was no clear path forward, no instruction manual explaining how to navigate a life that had suddenly been redefined. At the time, I didn’t have the language to express the tidal…
Life with Huntington’s disease is filled with challenges — some visible, some hidden. While the physical and emotional toll often takes center stage, there’s another weight that many in our community carry quietly: the financial burden. From navigating complex insurance policies to managing rising out-of-pocket expenses, the cost of…
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