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By Matthew Santamaria (msantamaria@hdsa.org)

There are some aspects in life that you cannot escape. One may try but it will always be there in some aspect. Twenty-six-year-old Tampa, Florida resident Jessica Robbins could not escape 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.

In 1993, Jessica was born and her grandmother was diagnosed with HD. As Jessica was growing up, she would see her fighting the disease as she would eventually be put in a nursing home. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

Her grandmother had three children and two of them were diagnosed with the disease. One of them was Jessica’s mother. 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. At the age of 43 years old, her mother passed away as she was also battling melanoma (skin cancer).

Jessica knows that her family is still at risk for the disease which includes her younger brother. Jessica was tested for HD.

The decision to get genetically tested is difficult to make. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center.

Jessica tested positive.

“We can’t choose our genetic makeup, and we don’t get to choose our lives, we get to make it the best we can with what we have.”

Jessica continues to keep a positive mindset and wants others to know that taking care of your mental health will go a long way.

“My biggest piece of advice is to get involved in anyways that you can,” Jessica explains. “I plan to get more involved in future HDSA Team Hope Walks and events planned.”

Jessica is also encouraging others to stay informed with the latest news for HD as it will create hope for our future.

“Currently, there are several trials and tons of research being done that give myself and many others hope,” said Jessica. “It’s up to us to spread awareness so we can find a cure and stop future generations from having to go through this.”

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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.