need to know
-
A woman who carries a Huntington’s disease gene mutation says she feels like a ‘ticking time bomb’
-
This rare disorder affects a person’s ability to move and think, as well as their mental health
-
“I cried harder than I thought I would. I just couldn’t stop,” Sarah Ball recalled of the moment she learned of her diagnosis.
A woman has admitted she felt like a “ticking time bomb” after learning she carried a genetic mutation for Huntington’s disease.
Sarah Power tested positive for the rare disease when she went to the doctor with her mother a few years ago.
According to the Mayo Clinic, Huntington’s disease causes nerve cells in the brain to decline, affecting a person’s ability to move and think, as well as their mental health.
Symptoms usually appear in your 30s or 40s. Power was 23 when he was diagnosed.
“I was devastated,” recalls Ball, now 41 subway. “I don’t have symptoms yet, but it feels like a ticking time bomb. It makes me live my life differently, though, because I know I’m going to get sick at some point.”
Extra strength: “I don’t take anything for granted and feel grateful for what I have today. I just live my life to the best of my ability and I’m glad I’m still here.”
Huntington’s disease has been found in Ball’s father’s family. Both her father and grandmother had it.
“I distinctly remember sitting in our living room when I was five years old and someone from the Huntington’s Disease Association told me that my grandma had the disease,” Ball said. “They explained it was hereditary, which didn’t mean much to me at the time, but I did feel the darkness in the room.”
“My grandmother was a smoker and I remember naively thinking that I would never smoke so I wouldn’t get Huntington’s disease,” she added.
When Ball’s grandfather died, his cause of death was listed as Huntington’s disease. Her father – whom Ball described as a “proud man” who denied having Huntington’s disease – died of the same disease in 2017 at the age of 63.
It wasn’t until Ball turned 18 that she was told she would have to attend a genetic counseling appointment related to Huntington’s disease.
“They knew my father had the disease, but they just told me but didn’t tell me,” she explained subway.
“I cried harder than I thought I would. I just couldn’t stop,” Ball added when she received a formal diagnosis a few years later. “The world was still spinning but it seemed to stand still for a while. It was so hard, having to tell so many of my friends over the phone. I couldn’t speak, I was broken down. I felt numb.”
After Ball received her diagnosis, her friends took her on backpacking trips to try to take her mind off the news.
“It was the best thing I could do. We saved as much money as we could and went to Brazil, Bora Bora, New Zealand and Thailand – and made as many memories as possible,” she said.
In September 2025, Ball received a surprising email from the Huntington’s Disease Association about a new treatment.
Cath Stanley, chief executive of the organization said subway “Early results” from the new treatment “suggest it can slow the progression of the disease by up to 75%.”
However, she also explained that in its current form, the treatment would require a lengthy surgery “lasting over 12 hours.”
Never miss a story — sign up for PEOPLE’s free daily newsletter to get the latest from PEOPLE, from celebrity news to compelling human interest stories.
Despite her disease, Ball now remains hopeful about the future. “I never allowed myself to think about what it would be like to see my grandchildren, or whether I would need a pension,” she told me subway. “This is the breakthrough we have been hoping and praying for.”
“Now, maybe I can grow up to be an old lady and enjoy all the things my mom had,” Ball added.
The Character Puzzle Crossword Puzzle is here! How quickly can you solve it? Play now!
Ball also told UK News that potential treatment options for Huntington’s disease “are the most exciting ideas out there”.
“I kept pinching myself,” she added.
Read the original article on People