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By Matthew Santamaria (msantamaria@hdsa.org)

Judy Johnson-Melville’s father always believed that he did not have 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.

At the age of eighty-one years old, he wanted to be tested for the disease. This is a difficult choice to make. Each year, 5-10% get tested. There are some people that see no benefit in knowing while others want to know so they can make informed choices about their future. There is no “right” answer as the decision is intensely personal. It can take up to two weeks to receive results.

“My cousin, uncle, and aunt were diagnosed with HD,” Judy explains. “They were the last of my dad’s at-risk family.”

Her father has lived till the age of eighty-one years old as he mainly wanted to know if he carried the HD gene for the sake of his children. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

Last year, he was shocked to know that he tested positive. This led Judy to find out her own future. Her neurologist recommended her to go to the University of California, San Diego 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.

She would then learn that she tested positive as well.

“I have more symptoms today than he does.... it’s hard to accept. But there’s no changing it.”

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

With the diagnosis, Judy has her passion to fall back on: running.

She was always shy and considered herself different from others. Because her father was in the Navy, she moved a lot and it was difficult for her to make friends. When she was twenty-five years old, she started going to YMCA aerobics class after work as it helped relieve stress.

“It took me years to connect with other women,” Judy explains. “I didn’t know how to relate to anyone. I met a couple women who talked me into running the AFC half marathon and then the St. George Marathon. I’ve since run twenty-six marathons and countless half’s. I found my passion.”

In 1991, she ran her first Boston Marathon and in her last marathon, her friend that said she was training for the marathon like it was her job. HD will not control her life as she always has her passion of running to remind her that she is in control of her body.

“I met an older man who said if he died on the road running, then he is ok with that,” Judy explains. “He’d die doing what he loved. That’s how I feel too, always need to be running.”

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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.