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By Matthew Santamaria (msantamaria@hdsa.org)

When you watch someone slowly fade away in life, it can change you personally and emotionally. From the time she was ten years old, Huntington’s disease (HD) has been in Janelle Johnson’s life.

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.

When she was young, her family told her that her mother needed to go to a nursing home as a result of the progression of the disease. Her mom was only thirty-nine years old and it confused Janelle why she needed to go to a nursing home at such a young age.

“I knew she was sick, but at the time I didn’t know how sick,” said Janelle. “I was told she had HD, but I didn’t understand at the time what that meant.”

When she was about fourteen years old, she found out that she and her younger brother, Justin, have the chance of inheriting 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.

“My life from that moment on was changed forever,” Janelle explains. “From the time my mother went into a nursing home until the she died at the age of forty-seven years old, my brother and I had to watch her get sick and sicker until she was no longer our mother.”

As the years would go on, Janelle and Justin would live their life but never forget about HD. At thirty years old, Justin decided to get tested after finding out that he was going to be a father.

He tested positive.

“Another moment in my life that changed me forever,” said Janelle. “My heart ached for my brother and for his unborn child. His daughter was tested in the womb and finally some good news – the gene did not pass down to his daughter – she was free from HD.”

As the years progressed, her brother would experience different symptoms from Janelle’s mother. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. This includes personality changes, mood swings, depression, forgetfulness, impaired judgement, involuntary movements, slurred speech, weight loss, and difficulty swallowing.

“He was impulsive, had problems with drugs and alcohol, the law, his marriage, day to day decisions, caring for himself, etc,” said Janelle. “At the age of thirty-nine years old, my brother had nine criminal charges against him and he was facing jail time or he needed to be placed in a locked facility that could handle him and his disease.”

The disease started to take over her brother and he wanted to take his own life. He would constantly tell his sister because he didn’t want HD to take over his life. However, it emotionally did. At the age of forty-one years old, Justin passed away.

“It pains me that he had to go through such a horrible death. I will do all that I can to keep his memory alive.”

Currently, Janelle is forty-five years old and has decided not to get tested. Each year, 5-10% get tested. She is happily married with a thirteen year old son.

“At this point in my life I chose to live my life thinking…. maybe I have it, maybe I don’t.” Janelle has a message for the HD Community: “I would like to see more people getting involved through HDSA,” Janelle explains. “I would strongly suggest attending your local support group. I joined when my brother was diagnosed and I have met some amazing friends who we are all a support for each other. In fact, the five of us make a point to go out once a month to dinner. Having that support from others who get it is extremely helpful. Share your story if you feel comfortable to let others know they are not alone.”

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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.