Photo credit, Katie Doy
If you could know if you had a gene that would shorten your life, would you do it?
That's the dilemma Laura Sides faced when she was offered a test for the rare form of early-onset dementia her father was diagnosed with in his 40s.
Laura spoke to Dr Sian Williams, host of BBC Radio 4's Life Changing podcast, about her decision to take the test and how it shaped the rest of her life.
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Laura says that growing up, she always felt very close to her father, as they had a “similar nature”. A general practitioner, he was “an extraordinary and caring father,” she said. When Alzheimer's symptoms worsened, Laura dropped out of college to care for him.
“We had a great time,” she says, remembering trips to the lighthouse and her collection of coasters. “I would prepare baths for him, put on music, and pour pitchers of hot water over his head, and he loved it.”
Photo credit, Laura Sides
It was during a hospital appointment with her father that a doctor told Laura she had a 50/50 chance of developing the same type of early-onset Alzheimer's disease, known as the "London variant."
“I just thought it was a gamble,” she says. "I was still so involved in what was going on with him [her father]. I repressed it all very deeply."
Laura's father died in 2009, just a year after her mother's death.
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“I suddenly felt an irresistible urge to leave,” she says. So she booked a solo trip around the world and finally settled in Melbourne, Australia.
That's when the idea of inheriting her father's disease began to form in her, and she went to see a specialist in 2013.
He explained to her that a test would determine with 99.999% certainty whether she would inherit early-onset dementia. If she carried the gene, the likely age of cognitive decline would be between 46 and 48, he said.
"I said to myself: I'm not there yet. I don't want to do this."
As Laura approached her thirties, she thought more and more about this test and decided to do it. But before that, she had to undergo six months of genetic counseling.
“There aren't many areas in life where you discover your destiny, and that's very difficult information to accept,” she says.
After six weeks of waiting for test results, the big day finally arrived. Laura says she felt “extremely nervous”.
She had reserved a table for lunch with a friend afterwards, but she went to her meeting alone.
"I said, 'Let's cut to the chase.' They said, 'We're so sorry, it's not good news, and you've inherited the gene.'
She remembers "almost blurry white noise, like she was just sitting there."
“I walked out of that room and my friend burst into hysterical tears.” But Laura didn't react. "We went to lunch and it was delicious. I don't know if I realized what was happening."
Reality caught up with me later. "I was angry. I found it so unfair. I was completely lost, I didn't know how I was supposed to live now. How to live with something like that?"
Laura was beginning to feel the need to return to the UK, especially as her sister was pregnant. “It makes no sense… to live on the other side of the world when she’s having a baby.”
However, her travels around the world continued as she participated in clinical trials before and after her diagnosis.
“It was so positive to be a part of something that came out of such a negative situation.”
Laura is now 43, three years older than the age doctors predicted she would start noticing symptoms.
"I'm still waiting for something to click. I imagine one day I'll start to decline, but that doesn't stop me from sleeping."
She is “grateful and very lucky to have people in her life.” But meeting new people is difficult.
"Should I tell them? Should I not tell them? When should I tell them?"
“And more often than not, when I’ve told them, it stops there.”
However, she claims that she was “proved wrong”.
"I was shown that I could be loved despite this. It fills my heart with comfort and joy."
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Laura says she always “naively assumed” she would be a mother.
"It's one of the few things I never doubted my abilities and wanted to do. It's hard... but there's no point in doing it. It wouldn't be fair."
For Laura, life is now about tapping into the things that make her happy.
"It's not about big ambitions. It's not like I want to see the Grand Canyon...I just want to spend time now with the people I love and who make me feel safe."
"I love nature. I love being outdoors. I'm obsessed with water. It might sound silly, but... I truly believe it's the little things that matter the most."
“I hope to spend a few wonderful years in this world…drinking champagne and eating oysters – two of my favorite things.”
We used AI to help translate this article, originally written in English. A BBC journalist checked the translation before publication. Learn more about how we use AI.
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