At a young age, Massachusetts resident Brendan Kieran was introduced to Huntington’s disease (HD) when a classmate’s family was affected by 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 during their prime working years and has no cure.
However, Brendan was later personally affected by the disease. About ten years ago, Brendan’s father, Dan, started to develop symptoms that the family thought may have been Parkinson’s disease. He was developing facial tics and falling a lot.
A few years later, Dan was diagnosed with HD. According to the family, Dan did not have a known family history of HD. Dan’s wife, Sheila, works in the healthcare field and did not know what HD was but learned about it in a Dateline special.
Dan also has five children at risk. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene.
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.
HDSA Centers of Excellence provide an elite 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.
As the family continued to navigate their HD journey, they decided to form their own fundraising team called Dan’s HD Destroyers. The team was one of the top fundraising teams for the local HDSA Team Hope Walk events in Massachusetts.
Team Hope is HDSA’s largest national grassroots fundraising event. Thousands of families, friends, co-workers, neighbors, and communities walk together each year to support HDSA's fight to improve the lives of people affected by HD and their families. To learn more about HDSA’s Team Hope Walk program, click here
Dan retired from his job and now puts his heart and soul into the fight against HD. According to Dan, he wants to be the person that has changed the world.
Brendan is more involved on the advocacy side to pass the HD Parity Act. He wants to do everything that he can to help the fight against HD. According to Dan, Brendan has a heart of gold as he once gave his gloves to a homeless person to keep that person warm.
Without passage of the HD Parity Act, patients with HD will continue to suffer the mandated 2-year waiting period for Medicare benefits after qualifying for Social Security Disability Insurance. To learn more, click here
Sheila encourages members of the HD Community to attend support groups. She has praised the group that she is in as it is good to know that you are not alone. She finds it comforting to talk to other families.
Support groups can offer vital emotional support, valuable advice about community-based resources as well as guidance from other group members about many of HD’s most challenging situations. To learn more, click here
The family has a message for the HD Community:
“If you are new to the HD Community, then there is a great community here for you.
Connect with others, work together, and get things done.”
“Keep the fight going. We will not stop till there is a cure. Keep up the good fight.”
“Use social media as a way to spread the word.
Connect with others in the HD Community as we need to spread more awareness.”
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