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By Matthew Santamaria (msantamaria@hdsa.org)

Jennifer Bandley is only twenty-two-years-old and resides in Provo, Utah. She is one of three children which includes two brothers. She recently graduated from Brigham Young University and currently works in the human resources department for the college along with running an Etsy shop.

Jennifer has her entire life ahead of her but knows what her future may hold.

Five years ago, her father was diagnosed with Huntington’s disease (HD). This 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.

“His story is unique because his parents are not symptomatic so we did not anticipate or even know anything about HD prior to his diagnosis except for research we had done on our own prior to him being tested,” Jennifer explains.

According to Jennifer, her grandparents were never tested for the disease and are now in their late seventies.

Since the diagnosis, according to Jennifer, her father has been incredibly strong, resilient, and hard working through the development and progression of the disease. “We are thankful everyday for his positive attitude and bravery in facing the hardship that comes with the disease.”

However, her father knew the chances of his children 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.

This scared him and the symptoms of the disease scared him the most as he was thinking about his children. 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.

In 2018, Jennifer wanted to be tested for HD. For people at-risk, this is a very difficult personal choice to make. There are people that see no benefit in knowing that they will develop HD someday. Others just want to end the uncertainty and make informed choices about their future. There is no “right” answer. It may take several weeks to receive your results from a genetic testing center.

The result came back and Jennifer tested positive.

“I was shocked and crushed and found myself feeling emotionally shattered,” said Jennifer. “It was hard to move forward, but, knowing my genetic status helped me to focus on what is important. For me that is faith, family, people, growth, and hope.”

Her focus led her to joining HDSA’s 2019 New York City Marathon team and she also attended the 34th Annual HDSA Convention in Boston.

She has a message for the HD Community:

“There is hope for the future, hope for a cure, and hope for me to live my life to the fullest. HD can be cripplingly isolating and hard to maneuver, but when we use our voice and talk about our hardships we can be a force for good. I may be positive for HD, but HD is not who I am."

To learn more about Jennifer Bandley and her family, 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