On September 2, the Huntington’s disease community lost one of its brightest lights: Carlos Contreras. Born on May 22, 1976, Carlos’ journey was filled with joy, resilience, and an unwavering commitment to love. His life reminds us that even in the face of a devastating disease, it is…
HD in Color - a Column by Tanita Allen
When the first cool breeze arrives amid the fading hours of daylight, I feel a pull toward home. Fall invites me to create a space that’s not only beautiful but safe, comforting, and easy to move through — a home that feels like a soft blanket at the end of…
Some changes arrive quietly, like leaves shifting one shade at a time until the whole tree glows with color. Friendship has been like that for me: not a single dramatic ending or beginning, but a gradual reshaping. One day, I looked back and realized the landscape of my relationships was…
The transition from summer into fall is beautiful, with cooler breezes, golden leaves, and cozy routines. But for someone living with Huntington’s disease, the change isn’t just about swapping flip-flops for sweaters. Seasonal shifts can bring real changes in how our bodies feel, how our moods flow, and how…
September has always signified a quiet shift for me. It’s evident in the crispness of the air, the softened light, and the way the days naturally fall into a steadier rhythm. Even though the calendar says the year is winding down, this month feels like a beginning. It’s not the…
There’s a unique kind of pain that doesn’t come from having Huntington’s disease, but rather having to convince people the disease exists. Living with Huntington’s as a Black woman has meant constantly being disbelieved, questioned, and scrutinized. It has meant being invisible in plain sight. My journey with Huntington’s…
Life with Huntington’s disease often feels unpredictable and overwhelming. There are times when the emotional and physical weight feels like too much to carry. In those moments, humor has often been my saving grace — a source of comfort, distraction, connection, and identity. Yet like many tools we turn…
Huntington’s disease has transformed nearly every part of my life: my body, my emotions, my routines. But one of the most profound changes has been in how I show up as a friend, and how friendship shows up for me. Huntington’s has a way of filtering out relationships. It…
Dating is already hard enough in this world of ghosting, swiping, and shallow connections. Add a terminal illness like Huntington’s disease into the mix and it becomes a minefield of awkward conversations, emotions, and misunderstandings. In the decade that I’ve been living with Huntington’s disease, I’ve been ghosted,…
There is a quiet rebellion in telling the truth about your body, especially when the world would prefer you stay silent, polished, and palatable. When I was diagnosed with Huntington’s disease, I didn’t know how to talk about what was happening inside me. I had learned, like many of…
Recent Posts
- The power of constructive dialogue in life with Huntington’s
- I insist on being seen as I am, not as someone else’s story
- FDA requests additional clinical trial of Huntington’s gene therapy AMT-130
- A log cabin miles from anywhere was just what the doctor ordered
- The invisible battle of staying present with Huntington’s disease