Navigating a new diagnosis of Huntington’s disease (HD) is a profoundly personal journey through a range of emotions, from shock and disbelief to worry. I know this experience all too well. Reflecting on my own path from diagnosis to today, there are so many lessons I wish I could…
This October has been one of the most inspiring and empowering months of my life as a Huntington’s disease (HD) patient advocate. I had the incredible opportunity to participate in three major advocacy events, each one special and impactful. Speaking to future doctors, celebrating with my dream medical team,…
It caught me off guard when a dear friend asked me recently, “How can I help you?” It wasn’t because I hadn’t been asked this before in different contexts, but rather that I realized I’d never truly given the question enough thought. Living with Huntington’s disease (HD) has…
Dating can be a complex and emotional experience under normal circumstances, but for someone living with Huntington’s disease (HD), the journey to find companionship presents unique challenges. One of the most painful aspects of dating with HD is the rejection I’ve encountered when disclosing my diagnosis. At…
Traveling can lead to excitement and adventure, but for those of us with Huntington’s disease (HD), it can also pose significant challenges. Whether it’s navigating an unfamiliar airport or managing chorea (involuntary movement) or fatigue, the experience can feel overwhelming. I’ve found that traveling with Huntington’s requires…
One of the most challenging aspects of living with Huntington’s disease (HD) is coming to terms with the progressive nature of the condition and the inevitable changes it brings. For those of us who are symptomatic, that involves not only adapting to physical and cognitive changes, but…
My name is Tanita Allen, and in 2012, I received life-changing news: I was diagnosed with Huntington’s disease (HD), a rare, neurodegenerative condition. Huntington’s is rare enough as it is, but the belief that it doesn’t affect people of African descent made getting a proper diagnosis even…
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