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Articles
What It’s Like to Test Positive for a Rare Disease and No One Understands How You Feel
I was out for coffee with a girlfriend one afternoon, shortly after I was diagnosed as gene positive for Huntington’s disease (HD). We were sitting in large brown leather chairs next to an electric fire place, our coffees on a small table between us. “I am worried...
Having a Role Model Helped Me to Heal
I was an emotional mess when I first met Jeff Carroll at a Huntington’s disease conference. My recent gene-positive diagnosis was on my mind. I couldn’t talk about it without crying, and I believed that I would never be happy again. My husband and I were trying to...
Hoping to Make Your Adoption Profile Stand Out? Here’s What Worked For Us
What do these boots have to do with adopting a baby? Before our daughter was born my husband and I spent five days in the mountains trekking under the midnight sun, hoping over ice cold streams, scrambling up large boulders, and stopping to take photographs of tiny...
‘Just Show Up’: Accepting Support from the Huntington’s Community
For a time following my diagnosis as gene-positive for Huntington's disease (HD), I avoided elderly people. The mere glimpse of a wrinkled hand was a reminder that I was going to develop Huntington's someday, and that was something I was trying to forget. Recently, my...
How I Reclaimed My Life by Performing Onstage
I was standing backstage in a dimly lit holding area sectioned off from the audience by a heavy velvet curtain. I took a deep breath, trying to stop the trembling that was making its way through my body. Dan, the event organizer, caught my eye mid-breath and gave me...
Thanks to My Dad’s Ideal Retired Life, I’m Less Afraid of My Future
Every time we visit my dad, we go for a walk on the beach. On a recent cool September afternoon, the four of us wandered along the water's edge, poking at rocks and admiring the ripples in the sand. My dad was wearing his green fleece jacket, jeans, and a pair of...
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