Connect with our local chapter:
By Matthew Santamaria (msantamaria@hdsa.org)

Growing up, nineteen-year-old Herkimer, New York resident Rebecca Eastwood did not know anything about 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.

“Growing up it would've been a lot easier knowing that my mom is just sick she doesn't actually hate you,” said Rebecca. “Instead feeling like my mother hated me and not knowing she was sick, I had to determine whether my mom abused me because she was a bad mother or because she's sick.”

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

“I knew my mom was some big bad person with lots of anger issues which were mostly taken out on me,” said Rebecca. “I didn’t know my parents knew that HD was in my mom’s family. However, my mother didn't want to face the fact that she could possibly have it.”

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.

“Everything about that disease was shoved under the rug and not expressed to me or my sister,” said Rebecca.

Between 2016 and 2017, Rebecca’s aunt made Rebecca’s mother get tested for HD because she almost went to nine years of jail due to selling her own mother’s drugs that she needed for her cancer treatment.

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.

Rebecca’s mother tested positive for the gene that causes HD.

“My mother’s behaviors correlated close to my grandfather’s behaviors, and he had HD,” Rebecca explains. “She didn't have to go to prison, but she found a new struggle. Living with HD.”

In November of 2017, Rebecca finally found out about HD as her mother was not getting any better and was put into a home. Rebecca and her sister spoke to a social worker who explained to them what HD is.

“My dad was already going to support groups and had already spoken to social workers,” said Rebecca. “We were the last to know. My dad hid us from it so we could focus on school and our high school lives without having it hanging in the backs of our minds but as the health of my mother decreased they had to tell us.”

In August of 2018, Rebecca saw her mother for the first time in more than seven years.

“Divorce court saw the actions that HD was creating as abuse, and in reality it was abuse and she wasn’t getting the help she needed, she was refusing help,” said Rebecca. “The court ordered my dad to have full custody and removed all visitation rights from my mother.”

As Rebecca was learning about HD, it made her reevaluate her entire relationship with her mother. She always felt her mother hated her but realized that the symptoms of HD were taking over her mother’s life. HD answered a lot of questions for Rebecca. Currently, her mother is in a nursing home.

“The relationship ended on bad terms with lots of hate, resentment and sadness,” Rebecca explains. “It would've been a lot easier knowing that my mom is just sick and that she doesn't actually hate you.”

Rebecca has a message for the HD Community:

“If I could give any advice it would be to speak up about it. Don't hide HD because it’s a lot less scary knowing why someone acting a certain way then trying to figure out why. HD shouldn't be something that's hidden. HD helps more people by speaking out about it then hiding it. I want to help others, be a voice but also a place for people to confide and get hope from. All any of us need is just a little bit of hope and a support system.”

###

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