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By Matthew Santamaria (msantamaria@hdsa.org)

At the age of twenty-five years old, Danielle Valenti’s life changed forever. She received a phone call that her mother had been diagnosed with Huntington’s disease (HD).

HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

As far as Danielle knew, HD did not run in her family and they never talked about it. However, her grandmother had an affair that Danielle knew nothing about. Danielle’s mother’s biological father had HD.

“That gene, and its presence in my mom’s declining health, led me on the painful journey of uncovering how my grandmother’s affair would forever affect my future,” said Danielle.

Danielle is an only child and had to be responsible for her mother’s care. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, impaired judgement, involuntary movements, slurred speech, and significant weight loss.

Her mother was staying at a nursing home in Vermont. During this time and with her health declining, her mother made a decision about her life.

“She wanted to pursue death with dignity. I support her choice, but her doctor tells us that courts won't conserve her mentally competent to qualify,” Danielle explains. “She decided to end her life by VSED (voluntarily stopping eating and drinking). She went more than sixty days without food.”

In 2014, on December 5th, her mother passed away.

A few months after her mother’s passing, Danielle decided to be tested for the disease. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

Each year, 5-10% of at risk patients are tested. The decision to be tested or not is entirely up to the individual and there is never a “right” answer. If you choose to be tested, then it is best to go to a genetic testing center as it may take several weeks to receive the results once the genetic testing is complete.

Danielle went to see a neurologist at Albany Medical Center. This is one of the 47 HDSA Centers of Excellence that provide an elite team approach to HD care and research. Professionals have extensive experience working with families affected by HD and work together to provide families the best HD care program.

“I don’t remember walking into my neurologist’s office for the results, but I’ll never forget taking one look at her face.”

Danielle tested positive.

“Things were dark for a few years,” Danielle explains. “I lost hope. I was very angry and sad. Mad that my idea of getting married and having children was lost. But then I put myself in therapy, joined my local HDSA group and started sharing my story. Then I jumped on a plane and headed to Bali (island in Indonesia) for a month, solo. I started living again.”

Today, she considers HD as only a small part of who she is. Danielle is a VP of account management at a tech company in Albany. She has an HD negative one-year-old named McKenna and Danielle is now engaged.

“I travel the world and have great friends,” Danielle explains. “I continue to do all the things I never thought I'd never get to enjoy.”

Danielle continues to spread HD awareness as she on the board for HDSA’s Albany Chapter. “I share my story with the world, because I believe sharing helps others learn and heal.”

Danielle talks more about her HD story on Tedx Talks, click here.

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

​This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org.