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By Matthew Santamaria (msantamaria@hdsa.org)

Note: In March of 2021, after this interview was completed, Tammy Stewart’s mother, Jessie Button, passed away in a car accident after visiting a COVID-19 vaccination clinic. Our condolences go to the family. To learn more about Jackie, click here

New York State resident Tammy Stewart knows fist hand the effect that Huntington’s disease (HD) can have on a family.

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.

More than forty years ago, Tammy’s father was diagnosed with the gene that causes HD. Tammy is one of six children at risk for HD. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene.

Before he was diagnosed, her father was a farmer and would fall more than once. According to Tammy, he was making mistakes that was unlike him which led him to see a doctor. He was labeled as “the town drunk” because of how the symptoms of HD can be perceived. However, at that time, HD was not as known as it is now. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgment, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

Tammy was only 6-years-old when she first learned about HD. For Tammy, it was tough growing up as her father’s symptoms were taking control as he displayed angry moods and rage. Her friends would not go to her house for birthday parties because of her father’s symptoms.

Tammy and her mother, Jessie, helped take care of him. At 18-years-old, she moved out of the house because of the angry moods and rage displayed by her father. When Tammy was 24-years-old, her father passed away.

He also has siblings, but Tammy is not in contact with them. According to Tammy, her family fought a lot over the denial of HD as family members were in different stages of HD. Therefore, for Tammy, it is important to increase awareness of HD.

For years, Tammy wanted to try and live her life and not care about HD. However, in 2006, Tammy decided to be 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.

Tammy tested positive as she was not the only sibling to do so. Five out of the six siblings tested positive. Her sister, Debbie, and brother, Mike, passed away. She also has two sisters that have HD.

Tammy has been a caregiver for the past forty years. After her father, she was a caregiver for Mike before he passed away and is now a caregiver for her sister, Laurie, who has anxiety when Tammy leaves the house.
 

According to Tammy, the most importance task to do as a caregiver is pay attention. She feels that is it importance to have things in place. There was also one incident when Tammy had a run in with a police officer as she feels police officers need to be better informed with HD.

There have been documented cases of people with HD having difficult interactions with law enforcement because their symptoms are misidentified, misunderstood, or mishandled. To read more, click here

As for Tammy, she has started to have physical symptoms which have included tremors, depression, rage, and loss of thought. Tammy goes to the University of Rochester for HD care and has praised the clinic.

This is one of the 54 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.
 

Tammy has three children at risk and has asked them to be tested before starting a family of their own. She has never hid HD from her children as they have done school papers and want to do more fundraisers in their local area.

According to Tammy, there is not enough people in her town that know about HD which led her to displaying HD awareness on her car, so everyone sees it. She has also enrolled in Enroll-HD, worldwide observational study for Huntington’s disease families. In an observational study, investigators assess health outcomes in groups of participants according to a research plan or protocol.

She was a participant for the Roche trails at the University of Buffalo, one of HDSA’s Centers of Excellence. Roche (known as Genentech in the USA) is conducting a Phase 3 trial called GENERATION-HD1 to test the ability of a drug called tominersen to slow down the symptoms of HD. Tominersen was designed to lower the amount of harmful huntingtin protein that builds up in the brain over the course of HD. This was an ongoing 2-year trial with 800 participants at nearly 100 sites worldwide. However, in 2021, the study was stopped.
 
Tammy has a message for the HD Community:

“Get tested. No matter how frustrating you get, be there for your family.” 

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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