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By Matthew Santamaria (msantamaria@hdsa.org)

St. Petersburg resident Claudine Walls has experienced a lot of heartbreak in her life.

Almost fifty years ago, her aunt, Albertha Johnson, married and had three children. A few years later, her husband started to have personality changes.

The family would later learn that this was one of the symptoms of Huntington’s disease (HD). This 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.

Albertha’s husband would later pass away due to complications from HD.

Albertha’s youngest daughter Suzette started to experience the same behaviors as her husband did. She would then take her to be tested and Suzette was diagnosed with Juvenile Onset Huntington Disease (JHD). This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain that affects children and teenagers.

JHD’s symptoms develop much quicker than Huntington’s disease (HD) but the symptoms are the same as it deteriorates a person’s physical and mental abilities. It can be described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. This also includes forgetfulness, impaired judgement, slurred speech, difficulty in swallowing, and significant weight loss.

The disease was wreaking havoc in their life as Suzette did not experience what the world had to offer. She passed away at the age of only two-years-old.

At the age of eighteen-years-old, her daughter Annette started to experience the same symptoms and passed away four years later.

By the time her son Mark was batting HD, Albertha passed away from Heart disease. In 2017, Mark passed away from HD and left behind two daughters.

Caludine never forgets where she came from as she is an author and spreads awareness wherever she can. She uses her love of music to share her emotions with HD. She has attended several HD fundraisers as she is honoring her family’s memory and to show others they are not alone in life.

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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 (HDSA) 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