By Matthew Santamaria (msantamaria@hdsa.org)
Minnesota resident Kari Martinson’s Huntington’s disease (HD) can be traced back to her grandfather.
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.
Before 1966, many assumed Kari’s grandfather was a drunk because of his antics and involuntary movements. He was later placed in the Veteran Affairs (VA) hospital. According to Kari, he was not treated well as they were misinformed about HD. He would later pass away.
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.
However, her family’s HD journey was not over. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene.
Kari describes her mother as a free spirit and fun to be around. Kari’s father was not around, so it gave Kari an opportunity to build a great bond with her mother. However, as the years went on, her mother started to develop mood swings and would later be diagnosed with HD. Kari became her caregiver until her mother passed away.
In 2006, Kari 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.
Kari tested positive and her three children are now at risk for HD. According to Kari, she regrets getting tested because she now thinks everything is a symptom.
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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
Minnesota resident Kari Martinson’s Huntington’s disease (HD) can be traced back to her grandfather.
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.
Before 1966, many assumed Kari’s grandfather was a drunk because of his antics and involuntary movements. He was later placed in the Veteran Affairs (VA) hospital. According to Kari, he was not treated well as they were misinformed about HD. He would later pass away.
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.
However, her family’s HD journey was not over. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene.
Kari describes her mother as a free spirit and fun to be around. Kari’s father was not around, so it gave Kari an opportunity to build a great bond with her mother. However, as the years went on, her mother started to develop mood swings and would later be diagnosed with HD. Kari became her caregiver until her mother passed away.
In 2006, Kari 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.
Kari tested positive and her three children are now at risk for HD. According to Kari, she regrets getting tested because she now thinks everything is a symptom.
Kari has a message for the HD Community:
“Be Strong. It is hard but you have to keep fighting every day.
Keep connected to the HD Community.”
“Be Strong. It is hard but you have to keep fighting every day.
Keep connected to the HD Community.”
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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