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By Matthew Santamaria (msantamaria@hdsa.org)

Jessica wished that she can change one moment in her life.

When she was four years old, Jessica met her great grandmother. At the time, she did not know that she was 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.

In her eyes, Jessica was afraid of her great grandmother. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. This includes personality changes, depression, impaired judgement, involuntary movements, slurred speech, difficulty swallowing, and significant weight loss.

“When I met her, she was strapped to a bed,” Jessica explains. “She couldn't communicate with words. She screamed and squawked and moved a lot.”

It was difficult for Jessica to hug her own great grandmother because she was afraid.

“I wanted nothing to do with that woman,” said Jessica. “In my mind, she scared me. I remember dad telling me that she was just asking for a hug but I didn’t believe him. I finally gave her a hug, with my dad, my protector, sandwiched between us. Needless to say, that day traumatized me.”

Jessica is now 37 years old and is raising awareness for HD. She wants to improve the lives of people and families that are living with the disease. “They don't just call this the family disease because it is genetic. Often this disease destroys families.”

Jessica wishes that she spent more time with her great grandmother because she now understands the full nature of Huntington’s disease.

“If I could turn back time, then I would sit at her bed side, listen to the screaming, and give her the biggest hug. She was not scary at all. I know that now!”

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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.