It was January 23, 2015, when I tested positive for the mutated Huntington’s Disease (HD) gene. HD is a disease that causes the progressive breakdown of nerve cells in the brain, deteriorating a person’s physical and mental abilities. Early symptoms may include uncontrolled movements, clumsiness, and balance problems. Later, the disease can take away a person’s ability to walk, talk, and swallow.
HD is often described as having the symptoms of ALS, Parkinson’s, and Alzheimer’s simultaneously. Today there are about 30,000 symptomatic Americans and more than 200,000 at risk of inheriting the disease. There’s no known cure for HD, but there is hope. As of right now I’m pre-symptomatic, which is the doctors’ way of saying it’s not if, but when I’ll experience these life-changing symptoms.
Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes the fatal disorder. I have four beautiful daughters who are at risk of inheriting this horrible disease. They’ve inspired me to educate others and raise awareness for HD in hopes of finding a cure through social media, fundraising events, and team committees.
In addition to running to raise funds and awareness, last February I participated in an HD-Fitness study in Iowa for people who tested positive for the disease and who were pre-symptomatic to determine the impact, if any, fitness has on prolonging the onset of this disease. Since then, I’ve embraced a healthier lifestyle of balanced nutrition, clean eating, and daily physical activity to contribute to maintaining my maximum functional ability and quality of life.
Since I’ve begun sharing my progress on social media, strangers from across the country have reached out and shared their stories, too, and said how they have been inspired by my positivity and passion in advocating for HD. Recently, I started the #StopDropandPlank4HD challenge, urging others to drop to their forearms in a core-challenging pushup position and share that on social media, as a unique way to raise awareness for HD. I took that mission to the Hudson Valley, hosting a live event with ArchCare at Ferncliff in Rhinebeck, which is home to one of the largest care centers for people with HD and right in our backyard. It has been amazing to see this challenge grow not just nationally, but also around the world.
In April, I spoke at my first event at the Philly Hope HD Walk and Run, and my wife and I recently attended the 33rd Annual HDSA Convention in Los Angeles. Getting involved is important to me; I’m currently serving on the HDSA-ArchCare Team Hope Walk – Hudson Valley committee to prepare for its 3rd Annual walk over the Hudson River in October.
My HD story is about hope. I’m committed to fighting and prolonging the onset of this disease for myself and others. I share my story with the hope that people who have been diagnosed with HD — or any other fatal disease — will not view it as a death sentence. It’s important to make the days count.
I’m still in control of my body and my mind. One day, HD will take that away from me. But it will never take away my heart or my soul. I have HD, but HD does not have me.
James Del Carpio resides in Dutchess County with his wife and daughters and serves as an advocate for those living with Huntington’s Disease.
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