Sarah Power was diagnosed with Huntington’s Disease in her twenties (Picture: Supplied)

When she was just 23, Sarah Power sat with her mum in a hospital room, waiting to hear whether she had tested positive for a disease that would drastically cut her life expectancy. 

‘It was a really harrowing moment,’ Sarah, now 41, recalls. ‘Nothing could prepare me for the news I was about to receive.’

That day she was told she carried the gene mutation for Huntington’s Disease, a fatal neurodegenerative disease which presents as a triad of progressive psychiatric, cognitive, and motor symptoms, and would develop it at some point in her lifetime. 

‘I fell to pieces. But it wasn’t just the pain I was feeling that hurt, it was knowing how my mum felt – grieving to see how much my diagnosis affected her,’ Sarah tells Metro.

The diagnosis, although shocking, hadn’t come as a huge surprise because both her dad and his mum, Sarah’s grandmother, also had Huntington’s. 

‘I vividly remember sitting in our living room when I was five, being told by someone from the Huntington’s Disease Association that my grandma had this disease,’ she tells Metro. ‘They were explaining it was hereditary, which didn’t mean a huge amount to me at the time, but I did feel this darkness in the room. My grandma had been a smoker, and I remember naively thinking I would never smoke so that I wouldn’t get Huntington’s.’

Eight years later, suffering from frequent falls, involuntary movements, and the inability to eat, Sarah’s grandmother passed away, the cause of death listed as Huntington’s. 

Sarah’s dad insisted he’d had genetic testing and didn’t carry the gene mutation, and would constantly deny he was at risk. 

‘He stuck with that story until the day he died,’ Sarah remembers. ‘He just wouldn’t go there as a proud man. I think it was his way of coping – just shutting it all down.’


Huntington’s Disease ran in Sarah’s family (Picture: Supplied)


Sarah’s dad lived in denial of the fact he had Huntington’s Disease (Picture: Supplied)

As a teenager, Sarah was desperate to get tested herself, but knew it wouldn’t be possible until she reached adulthood. ‘I thought it would be better to know, rather than not knowing,’ she explains.

Soon after her 18th birthday, she received a letter inviting her to attend a genetic counselling appointment, informing Sarah they had timely information they needed to share with her.

‘They knew my dad had it, and they were just telling me without telling me,’ she adds.

For two years, Sarah underwent counselling to ensure she was prepared for the diagnosis that might lay ahead, followed by blood neurological tests.

And then, it was confirmed in that hospital room when she was just 23 – Sarah would at some point in her life have Huntington’s Disease. 

‘I cried more than I thought possible, I just couldn’t stop,’ she says. ‘The world was still turning, but it was as though it was stood still for a while. It was so hard having to tell many of my friends over the phone. I couldn’t talk, I was shattered, I felt  numb.’

Waiting in Doctors Examination Room
Sarah’s life changed irreversibly on the day she found out she had the gene mutation (Picture: Getty Images)

Sarah phoned her brother, who at first said he didn’t want to be tested. Eventually he agreed and discovered he didn’t have the same gene mutation. Although the siblings don’t talk about it, Sarah suspects he found the negative test result almost as hard as her positive test – ‘like survivor’s guilt,’ she says.

‘And then a great friend of mine had the idea to book tickets to go backpacking for a few months,’ adds Sarah. ‘It was the best thing I could have done. We saved up as much money as possible, and then just went – to Brazil, Bora Bora, New Zealand, and Thailand – making as many memories as possible.’

However, escaping didn’t take the fear away, and each time Sarah told a friend or family member, she was reminded that this was real. 

‘When you have watched loved ones die, knowing you’re going to face it too – I still can’t get that out of my head,’ she explains. 

When Sarah’s dad died from Huntington’s in 2017 at the age of 63, even though she had expected it, and grieved his death even before his passing, she still felt enormous grief. 


Sarah was determined to live her life to the fullest, despite how difficult her diagnosis was (Picture: Supplied)

‘It was a relief as well,’ she admits. ‘He was so poorly, and although he had once had a good quality of life, no longer did at the very end.’

Before her dad became ill, he was ‘really sporty,’ so watching him become being bedridden was really tough on Sarah. 

‘It’s so cruel,’ she says. ‘Dad loved food, chocolate in particular, so the day he needed a feeding tube fitted was really hard. It was almost like the last bit of pleasure taken away from him.’

When Sarah met her now ex-husband, she told him about how she would at some point become unwell with Huntington’s. 

Even though she had previously decided not to have kids so as not to pass it on, after marrying, the couple decided to pay for IVF, which involved screening for the gene and would allow them to have a family while not passing on the genetic mutation. 

After losing two babies, Sarah was able to carry her first daughter full-term. 

‘We had our happy little family and thought we were done,’ she remembers. ‘But shockingly, I became pregnant naturally in 2021. I still can’t get my head around it. We went to a six-week scan and I heard the baby’s heartbeat. It was such a strong heartbeat. At 12 weeks, we could have had the baby tested for Huntington’s, but if the test was positive, they would have terminated the pregnancy. I just couldn’t bear to take her life away. I wanted to let fate do its thing.’

Now a stay-at-home mum with her two daughters, both so full of life, Sarah has no regrets – but she has spent years suppressing fears for herself, and for her second daughter. 


Sarah’s first daughter does not have the gene mutation, but Sarah’s second daughter may be diagnosed with Huntington’s later in her life (Picture: Supplied)

‘Normally, onset is between 30 and 50,’ she says. ‘I am pre-symptomatic, but it feels like I’m a ticking time bomb. It’s made me live my life differently though – knowing that I will get ill at some point. I don’t take anything for granted, and feel grateful for what I have today. I just try to live my life as much as I can, and I’m glad I’m still here.’

With some of the earliest signs of Huntington’s being changes in personality, clumsiness, loss of balance, and difficult learning new things, Sarah can’t help but worry if she drops something or makes a mistake. 

‘I wonder, is this the start for me?’ she says. ‘I try to stay positive, but some days are harder than others. I just want and desperately need to stay fit and healthy long enough for a treatment to help me.’

After many years, Sarah was offered a glimmer of hope at the end of September this year, when she opened an email from the Huntington’s Disease Association, announcing a new treatment. 

‘I had to read the email several times – I couldn’t sleep that night,’ she says with a smile. ‘I’ve never let myself think about what it would be like to see my grandchildren, or whether I would need a pension. I just never dreamed that a treatment would come along. It’s still sinking in – a pinch me moment. It’s the breakthrough we’ve all been hoping and praying for. 

Now, I might be able to grow into an old lady and enjoy all the things my mum has.’

The new treatment for Huntington’s Disease

Cath Stanley BEM, Chief Executive Huntington’s Disease Association tells Metro:

‘Around 8,000 people in the UK are living with Huntington’s disease, an inherited condition that slowly takes away control over movement, thinking and behaviour.

Another 32,000 are at risk, unsure whether they’ll one day face the same future. Huntington’s affects the brain’s nervous system due to a faulty gene.

For many, symptoms begin in their 30s or 40s just as careers, families, and futures are taking shape. As the disease progresses, people often lose their independence and need round-the-clock care.

We are thrilled by the early results of this new Huntington’s disease treatment, which suggest it could slow the condition’s progression by up to 75%.

The full trial results haven’t been published yet, and the company is seeking approval in the US before applying to European and UK regulators, which could take several years. It also appears it may only work for people at certain stages of the disease.

While the procedure is currently a major operation, lasting more than 12 hours, this is a huge step forward.’

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