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By Matthew Santamaria (msantamaria@hdsa.org)

Growing up, Massachusetts resident Jennifer Ritz has lived all around the New England region. She is a single mother with two daughters and has lived life to the fullest. However, Jennifer was at risk of Huntington’s disease (HD). Her father and brother passed away due to complications from the disease.

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 during their prime working years and has no cure.

“My two sisters and I agreed to never get tested and live life fully, but pay attention if family raised concerns that we were showing symptoms,” said Jennifer.
 

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.

The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgement, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

For most of her career, she has worked in banking and customer service. As Jennifer was approaching 50-years-old and her daughters were in high school, she went back to school for her master’s degree in accounting.

“I graduated, worked one year as an accountant but was fired for being too slow at learning my job,” Jennifer explains. “I was SHOCKED!! I have always been known for picking things up quickly. My sisters and I have always done research studies as at-risk families, so we have been familiar with Massachusetts General Hospital.”

Massachusetts General Hospital is one of the 50 HDSA Centers of Excellence that provide an elite team approach to HD care and research. Professionals have extensive experience working with families affected by HD and work together to provide families the best HD care program. 
 

In February 2019, Jennifer tested positive for HD. She was shocked.

“I felt ok, except for feeling super tired no matter what I was doing, and I noticed my left leg would drag when I was tired. I describe it to people as if I woke up with an extra-long left leg that grew overnight, and I must walk with. It is funny how as a kid I was worried about asking people with medical conditions what it felt like, I never asked my dad or brother about this, and feel bad.” 

Jennifer was also not prepared in protecting her family with long term care insurance as she let her life insurance lapse.

Without passage of the HD Parity Act, patients with HD will continue to suffer the mandated two-year waiting period for Medicare benefits after qualifying for Social Security Disability Insurance. During those two years, patients continue to decline, and are falling through our social safety net by being denied access to Medicare when they need it most. 

 
Jennifer has a message for the HD Community that was a road map that her brother gave her:

"Don't stop doing things for your whole health, meaning physical therapy, chiropractor, play video games for mind health at home, and cranio-sacral therapy. Eat well and wake up grateful and excited for each day you have, even if diminished. Even up till the end whenever we would ask him how he was he would always say, I am GREAT! Also... eat an ice cream EVERY DAY!”

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Huntington’s disease (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 during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD 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.  

HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day. 

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