Woman, 41, Admits She Feels ‘Like a Ticking Time Bomb’ After Learning She’s a Carrier for Fatal Huntington’s Disease

YOU NEED TO KNOW

• A woman with a gene mutation for Huntington’s disease said she felt like a ‘ticking time bomb’

• Rare disease affects a person’s mental health as well as their ability to move and think

• Sarah Power described the moment she learned of her diagnosis: “I cried more than I thought possible. I couldn’t stop.”

A woman admitted she felt like a “ticking time bomb” after learning she carried a gene mutation Huntington’s disease.

When Sarah Power went to visit a doctor with her mother years ago, she tested positive for a rare disease.

Huntington’s disease, according to Mayo ClinicIt causes nerve cells in the brain to deteriorate, affecting the individual’s ability to move and think, as well as their mental health.

Symptoms usually appear when a person is in their 30s or 40s. Power was 23 when he received his diagnosis.

“I was blown to pieces,” recalled Power, now 41 Metro. “I’m symptomatic, but it feels like I’m a ticking time bomb. But knowing that I will get sick at some point has made me live my life differently.”

Additional Strength: “I don’t take anything for granted and I’m grateful for what I have today. I just try to live my life the best I can and I’m happy to still be here.”

Huntington’s disease runs on Power’s paternal side. Both his father and grandmother had it.

“I vividly remember sitting in our living room when I was five years old and someone from the Huntington’s Disease Association told me that my grandmother had it,” Power said. “They were explaining that it was hereditary, which didn’t mean much to me at the time, but I felt the darkness in the room.”

“My grandmother was a smoker, and I remember naively thinking I would never smoke to avoid getting Huntington’s,” she added.

When Power’s grandfather died, the cause of death was listed as Huntington’s. Power’s father, whom Power 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 Power turned 18 that she was told she needed to go to a genetic counseling appointment for Huntington’s disease.

“They knew my dad had it and they were telling me without telling me,” he explained Metro.

When she received her official diagnosis years later, Power added, “I cried more than I thought possible. I couldn’t stop.” “The world was still spinning, but it was as if it had stood still for a while. It was very difficult to explain this to many of my friends on the phone. I couldn’t speak, I was shattered. I was numb.”

After Power received his diagnosis, his friends tried to distract him from the news by backpacking him.

“It was the best thing I could have done. We saved as much money as we could and then went to Brazil, Bora Bora, New Zealand and Thailand to make as many memories as possible,” he said.

In September 2025, Power received a surprising email from the Huntington Disease Association about a new treatment.

Cath Stanley, Chief Executive of the organisation, said: Metro “Early results” of the new treatment show it could slow the progression of the condition by up to 75%.

However, he also explained that the treatment in its current form requires a lengthy operation “taking more than 12 hours”.

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Despite his illness, Power is still hopeful for 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,” he said Metro. “This is the breakthrough we’ve all been hoping for and praying for.”

“Now I can grow up to be an old lady and enjoy everything my mother had,” Power added.

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Power also told Great Britain News The potential treatment option for Huntington’s disease “is the most exciting thought.”

“I keep pinching myself,” he added.

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