HDSA Centers of Excellence provide a team approach to Huntington’s disease care and research. Patients benefit from expert neurologists, psychiatrists, social workers, therapists, counselors and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease.
Through this friend is where Jennifer first learned about Huntington’s disease (HD), 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. Jennifer did not know about HD.
"It was a few months later when HD would become personal when I found out my adopted sister was at risk for HD,” said Jennifer. “Her maternal grandfather passed away in his 60’s, but the reason was never known to us. Her birth sister told her that their mother had HD.”
The family would do more research about HD and learn that every child of a parent with HD has a 50/50 chance of inheriting the disease.
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.
In 2019, Jennifer’s sister decided to get 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.
Unfortunately, the test came back positive for HD and her four children were now at risk.
"She had a fear of what HD would do to her,” Jennifer explains. “She has done her research and has a great family support system.”
Although Jennifer was not at risk of inheriting HD, she admitted that she was not mentally prepared to learn about her sister’s diagnosis. She wanted to take action and be involved in the Arizona community in the fight against HD.
Jennifer joined HDSA’s Arizona Chapter board and in 2022 she became HDSA’s Arizona Chapter President.
As Chapter President, she wants to focus on fundraising but also put an emphasis on developing a connection with the community in Arizona. Jennifer wants to broaden the horizons for the Chapter as she is excited about the upcoming events.
Jennifer has a message for the HD Community:
“I am grateful to be a part of the HD Community.
It is such a strong and resilient community.
As a leader, I am here to be supportive and show nobody is alone.”
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 firstname.lastname@example.org