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By Matthew Santamaria (msantamaria@hdsa.org)

Marie Morgan was born in Plymouth, Massachusetts. She has three brothers including Jason, Timothy, and Andrew. Diseases affected her family at a young age.

When Marie was only eight-years-old, her father passed away after a long battle with colon cancer.

“After losing my father, my mother stepped in to care for my brothers and I on her own, it was extremely difficult for her, thankfully she had support of friends and family,” said Marie. “My mom really did the best she could, and knowing what I know now, I guess it all makes a little more sense.”

At the age of forty-three-years-old, Marie’s mother was diagnosed with the gene that causes 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.

Marie was only eighteen-years-old at the time.

“My mother and her siblings all had children during a time where they didn’t have as much knowledge about HD and there was no test for the disease at that time either,” Marie explains. “So, unfortunately there is a pretty big history of this disease in my family, but I truly believe that my family was given HD for a reason.”

Before she was diagnosed family and friends noticed that there was something off with Marie’s mother. However, they thought that this was part of the grieving process with losing her husband.

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

“She was having trouble keeping up with her finances, she was working eighty hours a week, but as much as she worked she just was so overwhelmed,” said Marie. “Looking back, I can see so many signs my mother was giving us, but unfortunately we just maybe hoping for the best after having lost my dad.”

Marie’s grandfather passed away due to complications from HD. Her grandmother went on to be his caretaker as well as eight of her eleven children including Marie. At the age of fifty-seven-years-old, Marie’s mother passed away due to complications from HD.

Marie, Jason, Timothy, and Andrew wanted to know their own HD future. 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 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.

All of the Morgan siblings tested positive for the gene that causes HD.

“We have all dealt with our diagnosis differently,” Marie explains.

Tim did not take the news well. After being sober for a long time, Tim turned to alcohol again after testing positive for the gene that causes HD. At thirty-eight-years-old, Tim passed away in a drunk driving accident.

“After losing my brother, I knew that I would not let myself deal with a diagnosis the same way Tim did,” said Marie. “Although I in no way have this figured out I am able to continue working a full time job, and I am able to use the benefits afforded by that job to try and continue that for as long as I can physically and mentally can.”

Marie has a message for the HD Community:

“I truly hope that folks can allow themselves to utilize all the resources that they have available to them, and to really be self-aware if you are at risk. Thankfully, we are alive at a time where there is more medical knowledge about HD than ever before, and there are places you can go where you can see a doctor and get information about testing.”

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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