By Matthew Santamaria (msantamaria@hdsa.org)
Tennessee resident Ginger Hermes lived in Reno, Nevada for more than twenty years but returned home to Tennessee.
Ginger has been married for more than twenty-nine years and has four children. Then, starting in 2014, she started to have problems with her health.
She was diagnosed with stage three thyroid cancer and had a thyroidectomy, an operation that involves the surgical removal of all or part of the thyroid gland. Following this, she would go through radioactive iodine therapy which can be used to treat thyroid cancer.
In 2015, as she was completing the therapy, her mother passed away on Valentine’s Day. In that same year, she started to develop involuntary movements which confused Ginger because she did not drink.
“My primary care doctor sent me to a neurologist who ran a lot of tests,” said Ginger. "When they were unable to reach a diagnosis, he sent me for genetic testing. I was starting to have lots of trouble with swallowing and also was having some harsh mental health issues which included angry outbursts. I was sent to a psychiatrist but when the genetic tests came back, I tested positive for 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.
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.
Ginger’s symptoms include twitches, involuntary movements, memory loss, stomach issues, patience issues, slurred speech, and choking.
She started to have more health problems as she was also diagnosed with chronic myeloid leukemia, a slowly progressing and uncommon type of blood-cell cancer that begins in the bone marrow.
"Cancer has been taxing physically and mentally and all these other issues seem to exacerbate my HD," Ginger explains. “I have horrible days where I can’t get my hands and legs to do what I need them to do and I have hallucinations and just all around don’t feel right.
She has a great support system in her family as they help take care of her.
Ginger has a message for the HD Community:
“My story is a rough one but at the same time I have learned so much
and met wonderful people and medical professionals along my journey.”
###
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
Tennessee resident Ginger Hermes lived in Reno, Nevada for more than twenty years but returned home to Tennessee.
Ginger has been married for more than twenty-nine years and has four children. Then, starting in 2014, she started to have problems with her health.
She was diagnosed with stage three thyroid cancer and had a thyroidectomy, an operation that involves the surgical removal of all or part of the thyroid gland. Following this, she would go through radioactive iodine therapy which can be used to treat thyroid cancer.
In 2015, as she was completing the therapy, her mother passed away on Valentine’s Day. In that same year, she started to develop involuntary movements which confused Ginger because she did not drink.
“My primary care doctor sent me to a neurologist who ran a lot of tests,” said Ginger. "When they were unable to reach a diagnosis, he sent me for genetic testing. I was starting to have lots of trouble with swallowing and also was having some harsh mental health issues which included angry outbursts. I was sent to a psychiatrist but when the genetic tests came back, I tested positive for 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.
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.
Ginger’s symptoms include twitches, involuntary movements, memory loss, stomach issues, patience issues, slurred speech, and choking.
She started to have more health problems as she was also diagnosed with chronic myeloid leukemia, a slowly progressing and uncommon type of blood-cell cancer that begins in the bone marrow.
"Cancer has been taxing physically and mentally and all these other issues seem to exacerbate my HD," Ginger explains. “I have horrible days where I can’t get my hands and legs to do what I need them to do and I have hallucinations and just all around don’t feel right.
She has a great support system in her family as they help take care of her.
Ginger has a message for the HD Community:
“My story is a rough one but at the same time I have learned so much
and met wonderful people and medical professionals along my journey.”
###
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