By Matthew Santamaria (msantamaria@hdsa.org)
The following story features someone who was willing to courageously share their story, but remain anonymous.
Illinois resident “Ann” learned about Huntington’s disease (HD) in her twenties.
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 father was diagnosed with the gene that causes HD in his forties, his parents did not have any knowledge that HD was in the family. His symptoms including difficulty in talking, walking, and difficulty with driving.
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.
According to “Ann”, her mother was the caregiver. She praised her mother for going above and beyond for her father. For example, when he would go to the hospital, he would have bed sores. Meanwhile, at home, he had no bed sores.
However, HD did mean that “Ann” and her siblings were at risk for HD. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene.
“Ann’s” second oldest sibling tested positive for HD and had symptoms including angry outbursts and involuntary movements. According to “Ann”, there were people that noticed the symptoms in church.
“Ann’s” sister was also diagnosed with HD. She would not take her medicine and it would make “Ann” angry that she was not helping herself. She would walk away from the house more than once which resulted in her being placed in a nursing home. Looking back, “Ann” feels angry about being mad during that time because she did not understand HD fully.
As for “Ann”, she knew that she could be tested for HD but wanted to live her life and left life come to her.
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.
For more than thirty years, “Ann” worked in a psychiatric center for those charged with crime. However, her anxiety worsened as it affected her driving which resulted in her leaving her job. She went to therapy for more than twenty years and developed more cognitive symptoms. She would later test positive for HD. “Ann” wants more people to know about depression and anxiety for those affected with HD.
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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
The following story features someone who was willing to courageously share their story, but remain anonymous.
Illinois resident “Ann” learned about Huntington’s disease (HD) in her twenties.
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 father was diagnosed with the gene that causes HD in his forties, his parents did not have any knowledge that HD was in the family. His symptoms including difficulty in talking, walking, and difficulty with driving.
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.
According to “Ann”, her mother was the caregiver. She praised her mother for going above and beyond for her father. For example, when he would go to the hospital, he would have bed sores. Meanwhile, at home, he had no bed sores.
However, HD did mean that “Ann” and her siblings were at risk for HD. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene.
“Ann’s” second oldest sibling tested positive for HD and had symptoms including angry outbursts and involuntary movements. According to “Ann”, there were people that noticed the symptoms in church.
“Ann’s” sister was also diagnosed with HD. She would not take her medicine and it would make “Ann” angry that she was not helping herself. She would walk away from the house more than once which resulted in her being placed in a nursing home. Looking back, “Ann” feels angry about being mad during that time because she did not understand HD fully.
As for “Ann”, she knew that she could be tested for HD but wanted to live her life and left life come to her.
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.
For more than thirty years, “Ann” worked in a psychiatric center for those charged with crime. However, her anxiety worsened as it affected her driving which resulted in her leaving her job. She went to therapy for more than twenty years and developed more cognitive symptoms. She would later test positive for HD. “Ann” wants more people to know about depression and anxiety for those affected with HD.
“Ann” has a message for the HD Community:
“Hope for a cure. Be involved with support groups virtually/in-person. Stay educated about HD.”
“Hope for a cure. Be involved with support groups virtually/in-person. Stay educated about HD.”
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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