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…
Some days, living with Huntington’s disease feels like trying to catch a butterfly in a storm. The winds of chorea, fatigue, mood swings, and forgetfulness push against the delicate wings of joy. Yet through it all, I’ve learned to reach for joy anyway. To find purpose in the present…
Living with Huntington’s disease has taught me that self-care is not a luxury, but a commitment, an act of self-preservation, and a form of self-respect. Before my diagnosis, I had a very different idea of what self-care meant. I thought it was about escaping life’s stressors with…
Living with Huntington’s disease (HD) means navigating a wide range of symptoms that can impact my energy, coordination, and even my appetite. Some days, I wake up feeling strong and motivated, while other days, I need to give myself extra grace just to get through simple tasks. One way…
A recent weekend in North Carolina was nothing short of magical. I was invited by the nonprofit advocacy group HD Reach to be the keynote speaker for their annual Education Day. The theme this year — “HD Has Color” — couldn’t have been more perfect. It felt like an affirmation…
The sun filters through the trees, casting golden light onto the path ahead of me. The crisp morning air carries the scent of damp earth, and with each step, I feel more connected to the world around me. Nature has become more than just a backdrop to my life; it…
Spring has always been my favorite season, not just because of the warmer weather or the return of blossoms, but because it’s a reminder that renewal is possible. No matter how harsh the winter has been, no matter how barren the trees may look, life still finds a way to…
When I received the invitation from Brown University’s School of Public Health to discuss my memoir, “We Exist,” I felt deeply honored. As an advocate for Huntington’s disease (HD) awareness, particularly from the perspective of a marginalized community, I knew this was an invaluable opportunity to engage with…
Fatigue and sleep disruptions have been some of the most challenging aspects for me while living with Huntington’s disease. They creep in slowly, often unnoticed at first, until they begin to shape the rhythm of my daily life. Managing them has required a combination of self-awareness, adaptability, and a…
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