By Matthew Santamaria (msantamaria@hdsa.org)
Massachusetts resident Veronica Cannata did not see her father for more than twenty years. In 2020, she wanted to find him.
During her journey to meet her father, Veronica would connect with her grandfather and she was informed that her father passed away due to complications from 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 during their prime working years and has no cure.
Her grandfather would go on to explain the risk to Veronica. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Veronica wanted to get tested.
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.
In February of 2021, Veronica tested positive for the gene that causes HD and she also has a son that is at risk as well. Veronica’s mother did not know about HD and the risk in her family. According to Veronica, her mother thought Veronica's grandmother (father side) had Parkinson’s disease but never saw Veronica's father symptomatic.
The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgement, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.
Veronica currently goes to Beth Israel Deaconess Medical Center for HD care and has praised the hospital. 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.
The positive diagnosis has made Veronica wanting to live her life to the fullest and do as much as she can. She wants to go to as many family functions as she can.
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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
Massachusetts resident Veronica Cannata did not see her father for more than twenty years. In 2020, she wanted to find him.
During her journey to meet her father, Veronica would connect with her grandfather and she was informed that her father passed away due to complications from 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 during their prime working years and has no cure.
Her grandfather would go on to explain the risk to Veronica. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Veronica wanted to get tested.
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.
In February of 2021, Veronica tested positive for the gene that causes HD and she also has a son that is at risk as well. Veronica’s mother did not know about HD and the risk in her family. According to Veronica, her mother thought Veronica's grandmother (father side) had Parkinson’s disease but never saw Veronica's father symptomatic.
The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgement, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.
Veronica currently goes to Beth Israel Deaconess Medical Center for HD care and has praised the hospital. 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.
The positive diagnosis has made Veronica wanting to live her life to the fullest and do as much as she can. She wants to go to as many family functions as she can.
Veronica has a message for the HD Community:
“Live your life to the fullest. Don’t die with dreams, die with memories.”
“Live your life to the fullest. Don’t die with dreams, die with memories.”
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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