{"id":7753,"date":"2025-11-02T12:00:00","date_gmt":"2025-11-02T13:00:00","guid":{"rendered":"http:\/\/curiousdrive.com\/?p=7753"},"modified":"2025-11-05T21:35:07","modified_gmt":"2025-11-05T21:35:07","slug":"ive-known-how-im-going-to-die-for-18-years-i-feel-like-a-ticking-timebomb","status":"publish","type":"post","link":"http:\/\/curiousdrive.com\/index.php\/2025\/11\/02\/ive-known-how-im-going-to-die-for-18-years-i-feel-like-a-ticking-timebomb\/","title":{"rendered":"I\u2019ve known how I\u2019m going to die for 18 years \u2013 I feel like a ticking timebomb"},"content":{"rendered":"
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Sarah Power was diagnosed with Huntington’s Disease in her twenties (Picture: Supplied)<\/figcaption><\/figure>\n

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

\u2018It was a really harrowing moment,\u2019 Sarah, now 41, recalls. \u2018Nothing could prepare me for the news I was about to receive.\u2019<\/p>\n

That day she was told she carried the gene mutation for Huntington\u2019s Disease<\/a>, a fatal neurodegenerative disease which presents as a triad of progressive psychiatric, cognitive, and motor symptoms<\/a>, and would develop it at some point in her lifetime. <\/p>\n

\u2018I fell to pieces. But it wasn\u2019t just the pain I was feeling that hurt, it was knowing how my mum felt \u2013 grieving to see how much my diagnosis affected her,’ Sarah tells Metro<\/strong>.<\/p>\n

The diagnosis, although shocking, hadn\u2019t come as a huge surprise because both her dad and his mum, Sarah\u2019s grandmother, also had Huntington\u2019s<\/a>. <\/p>\n

\u2018I vividly remember sitting in our living room when I was five, being told by someone from the Huntington\u2019s Disease Association that my grandma had this disease,\u2019 she tells Metro<\/strong>. \u2018They were explaining it was hereditary, which didn\u2019t mean a huge amount to me at the time, but I did feel this darkness in the room. My grandma<\/a> had been a smoker, and I remember naively thinking I would never smoke so that I wouldn\u2019t get Huntington\u2019s.\u2019<\/p>\n

Eight years later, suffering from frequent falls, involuntary movements, and the inability to eat, Sarah\u2019s grandmother passed away, the cause of death listed as Huntington\u2019s. <\/p>\n

Sarah\u2019s dad insisted he\u2019d had genetic testing and didn\u2019t carry the gene mutation<\/a>, and would constantly deny he was at risk. <\/p>\n

\u2018He stuck with that story until the day he died,\u2019 Sarah remembers. \u2018He just wouldn\u2019t go there as a proud man. I think it was his way of coping \u2013 just shutting it all down.\u2019<\/p>\n

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Huntington’s Disease ran in Sarah’s family (Picture: Supplied)<\/figcaption><\/figure>\n
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Sarah’s dad lived in denial of the fact he had Huntington’s Disease (Picture: Supplied)<\/figcaption><\/figure>\n

As a teenager, Sarah was desperate to get tested herself, but knew it wouldn\u2019t be possible until she reached adulthood. \u2018I thought it would be better to know, rather than not knowing,\u2019 she explains.<\/p>\n

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

\u2018They knew my dad had it, and they were just telling me without telling me,\u2019 she adds.<\/p>\n

For two years, Sarah underwent counselling to ensure she was prepared for the diagnosis<\/a> that might lay ahead, followed by blood neurological tests.<\/p>\n

And then, it was confirmed in that hospital room when she was just 23 \u2013 Sarah would at some point in her life have Huntington\u2019s Disease. <\/p>\n

\u2018I cried<\/a> more than I thought possible, I just couldn\u2019t stop,\u2019 she says. \u2018The 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<\/a>. I couldn\u2019t talk, I was shattered, I felt  numb.\u2019<\/p>\n

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\n\t\t\"Waiting\t<\/div>
Sarah’s life changed irreversibly on the day she found out she had the gene mutation (Picture: Getty Images)<\/figcaption><\/figure>\n

Sarah phoned her brother, who at first said he didn\u2019t want to be tested. Eventually he agreed and discovered he didn\u2019t have the same gene mutation. Although the siblings don\u2019t talk about it, Sarah suspects he found the negative test result almost as hard<\/a> as her positive test – \u2018like survivor\u2019s guilt<\/a>,\u2019 she says.<\/p>\n

\u2018And then a great friend of mine had the idea to book tickets to go backpacking for a few months,\u2019 adds Sarah. \u2018It was the best thing I could have done. We saved up as much money as possible, and then just went \u2013 to Brazil<\/a>, Bora Bora, New Zealand<\/a>, and Thailand – making as many memories as possible.\u2019<\/p>\n

However, escaping didn\u2019t take the fear away, and each time Sarah told a friend or family member<\/a>, she was reminded that this was real. <\/p>\n

\u2018When you have watched loved ones die, knowing you\u2019re going to face it too \u2013 I still can\u2019t get that out of my head,\u2019 she explains. <\/p>\n

When Sarah\u2019s dad died from Huntington\u2019s 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<\/a>. <\/p>\n

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Sarah was determined to live her life to the fullest, despite how difficult her diagnosis was (Picture: Supplied)<\/figcaption><\/figure>\n

\u2018It was a relief as well,\u2019 she admits. \u2018He was so poorly, and although he had once had a good quality of life, no longer did at the very end.\u2019<\/p>\n

Before her dad became ill, he was \u2018really sporty,\u2019 so watching him become being bedridden was really tough on Sarah. <\/p>\n

\u2018It\u2019s so cruel,\u2019 she says. \u2018Dad 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.\u2019<\/p>\n

When Sarah met her now ex-husband, she told him about how she would at some point become unwell with Huntington\u2019s. <\/p>\n

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<\/a>, which involved screening for the gene and would allow them to have a family while not passing on the genetic mutation. <\/p>\n

After losing two babies<\/a>, Sarah was able to carry her first daughter full-term. <\/p>\n

\u2018We had our happy little family<\/a> and thought we were done,\u2019 she remembers. \u2018But shockingly, I became pregnant naturally in 2021. I still can\u2019t get my head around it. We went to a six-week scan and I heard the baby\u2019s heartbeat. It was such a strong heartbeat. At 12 weeks, we could have had the baby tested for Huntington\u2019s, but if the test was positive, they would have terminated the pregnancy. I just couldn\u2019t bear to take her life away. I wanted to let fate do its thing.\u2019<\/p>\n

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. <\/strong><\/p>\n

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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)<\/figcaption><\/figure>\n

\u2018Normally, onset is between 30 and 50,\u2019 she says. \u2018I am pre-symptomatic, but it feels like I\u2019m a ticking time bomb. It\u2019s made me live my life differently though \u2013 knowing that I will get ill at some point. I don\u2019t take anything for granted, and feel grateful<\/a> for what I have today. I just try to live my life as much as I can, and I’m glad I\u2019m still here.\u2019<\/p>\n

With some of the earliest signs of Huntington\u2019s being changes in personality, clumsiness, <\/a>loss of balance, and difficult learning new things, Sarah can’t help but worry if she drops something or makes a mistake. <\/p>\n

\u2018I wonder, is this the start for me?\u2019 she says. \u2018I try to stay positive, but some days are harder than others. I just want and desperately need to stay fit and healthy<\/a> long enough for a treatment to help me.\u2019<\/p>\n

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\u2019s Disease Association, announcing a new treatment. <\/p>\n

\u2018I had to read the email several times \u2013 I couldn\u2019t sleep that night,\u2019 she says with a smile. \u2018I\u2019ve never let myself think about what it would be like to see my grandchildren<\/a>, or whether I would need a pension<\/a>. I just never dreamed that a treatment would come along. It\u2019s still sinking in \u2013 a pinch me moment. It\u2019s the breakthrough we\u2019ve all been hoping and praying for. <\/p>\n

Now, I might be able to grow into an old lady and enjoy all the things my mum has.\u2019<\/p>\n

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\n\t\t\t\tThe new treatment for Huntington\u2019s Disease\t\t\t<\/h2>\n
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Cath Stanley BEM, Chief Executive Huntington\u2019s Disease Association <\/a>tells Metro<\/strong>:<\/p>\n

\u2018Around 8,000 people in the UK are living with Huntington\u2019s disease, an inherited condition that slowly takes away control over movement, thinking and behaviour.<\/p>\n

Another 32,000 are at risk, unsure whether they\u2019ll one day face the same future. Huntington\u2019s affects the brain\u2019s nervous system due to a faulty gene.<\/p>\n

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.<\/p>\n

We are thrilled by the early results of this new Huntington\u2019s disease treatment, which suggest it could slow the condition\u2019s progression by up to 75%.<\/p>\n

The full trial results haven\u2019t been published yet, and the company is seeking approval in the US<\/a> 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.<\/p>\n

While the procedure is currently a major operation, lasting more than 12 hours, this is a huge step forward.’<\/p>\n<\/p><\/div>\n<\/p><\/div>\n<\/p>\n


\n\t\t\tComment now<\/title><\/span><br \/>\n\t\t\t<span class=\"share-bar-comments__label\">Comments<\/span><br \/>\n\t\t<\/a><a class=\"metro-button share-bar-preferred-source\" data-vars-position=\"bottom\" href=\"https:\/\/google.com\/preferences\/source?q=https:\/\/metro.co.uk\" target=\"_blank\" rel=\"noopener\"><br \/>\n\t\t\t\t<span><title>Add Metro as a Preferred Source on Google<\/title><\/span><br \/>\n\t\t\t\t<span class=\"share-bar-preferred-source__label\">Add as preferred source<\/span><br \/>\n\t\t\t<\/a><\/section>\n","protected":false},"excerpt":{"rendered":"<p>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.  \u2018It was a really harrowing moment,\u2019 Sarah, now 41, recalls. […]<\/p>\n","protected":false},"author":1,"featured_media":7755,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[9],"tags":[],"_links":{"self":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts\/7753"}],"collection":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/comments?post=7753"}],"version-history":[{"count":3,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts\/7753\/revisions"}],"predecessor-version":[{"id":7762,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts\/7753\/revisions\/7762"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/media\/7755"}],"wp:attachment":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/media?parent=7753"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/categories?post=7753"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/tags?post=7753"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}