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By Matthew Santamaria (msantamaria@hdsa.org)

Ky Powell grew up in Massachusetts and moved to Tampa, Florida at a young age. She considered her grandmother as mean and “nothing but a drunk”. However, two weeks before her grandmother died, she was diagnosed with the gene that causes 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.

“She spent the last five years of her life in the most inhumane conditions because there wasn’t enough education on HD,” said Ky. “I remember hating going to see her because I remember hearing them say, ‘be nice to her, family is here’.”

Throughout her childhood, she was her mother’s caregiver. Her mother broke her back and went through battles with depression. Then, Ky’s world got turned upside down when her mother was also diagnosed with HD, as well as, all her siblings. According to Ky, her aunts and uncles are in different stages of HD.

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.

“I remember the first fight I got into with my mom, she didn’t tell me she had HD and I didn’t understand what was going on,” Ky explains. “She said something, and it was so out of her character which took me back. I took two years off to travel the world and my mom got her diagnosis while I was overseas, knowing I would get on the next flight back she did not tell me until I was home for a while. I remember when my mom first told me I wanted to cry so bad, but I couldn’t.”

Because of HD, Ky saw a difference in her mother.

“I saw HD spark something in my mother that was so beautiful to see it made me fully embrace this community,” said Ky.

She is currently in the genetic testing process 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.

Ky has also assisted with the Tampa Team Hope Walk. Team Hope is HDSA’s largest national grassroots fundraising event. Thousands of families, friends, co-workers, neighbors, and communities walk together each year to support HDSA's fight to improve the lives of people affected by Huntington's disease (HD) and their families.

“It was super emotional for my family to have a different view of life when it comes to HD,” Ky explains.

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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