By Matthew Santamaria (firstname.lastname@example.org)
Carla Jander Kelley, residing in Clyde, Texas, was an elementary school teacher for more than 25 years. Carla felt it was a calling for her to teach because she loved children. However, it was about 10 years ago when Carla started to have balance issues as well as developing tremors.
Then, her symptoms increased which included having trouble saying particular words. According to Carla, she knew something was wrong but did not know what it was as she did not get much help from her local town.
She would go to a different hospital and was diagnosed with the gene that causes Huntington’s disease (HD). This 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.
According to Carla, she had mixed reactions to the news which included relief and shock. She was glad to know what was causing the changes in her body.
Her mother passed away at 78-years-old and her father at 81-years-old. According to Carla, she is the first known person in the family to be diagnosed with HD. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Her brother has decided to not be tested at this time.
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.
The symptoms of HD were parallel to what Carla was going through that can be 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.
Carla has a son at risk as well as two grandchildren. According to Carla, there is nobody in her town that she knows of that has HD or is affected by HD. There was a local fundraiser but nobody at the event had HD. This has made her feel isolated because nobody in the town knows about HD and does not care, according to Carla.
Carla has a message for the HD Community:
“Keep the faith and be hopeful for a cure.”
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 email@example.com