image copyrightKatie Doy
If you could find out if you had a gene that would shorten your life, would you do it?
This is the dilemma Laura Sides faced when she was offered a test for the rare form of early-onset dementia her father was diagnosed with at age 40.
Laura spoke to Dr Sian Williams, host of BBC Radio 4's Life Changing podcast, about her decision to get tested and how it has shaped the rest of her life.
Laura says that, during her childhood, she always felt very close to her father, since they had a similar personality.
He was a doctor and "the most wonderful, loving father," she says.
When the symptoms of his Alzheimer's worsened, Laura left university to care for him.
"We had a wonderful time," he says, remembering trips to a lighthouse and his love of collecting coasters. "I ran baths for him, played music for him, and poured jugs of hot water over his head, and he loved it."
image copyrightLaura Sides
It was during her father's hospital appointment that a doctor told Laura that she had a 50% chance of developing the same type of early-onset Alzheimer's known as the "London variant."
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"All I could think was, 'It's like a coin toss,'" he says. "I was still very involved in what was happening to him [her father]. I just buried it deep, deep inside."
Laura's father died in 2009, just a year after her mother's death.
"Suddenly I felt an irresistible urge to leave," he says. So she booked a solo trip around the world and eventually settled in Melbourne, Australia.
It was there that the idea of whether he had inherited his father's disease began to weigh on his mind, and in 2013 he went to consult with a specialist.
He told her that a test could determine with 99.999% certainty whether she would inherit early-onset dementia. If he had the gene, his expected age of decline would be between 46 and 48, he explained.
"I just thought: I'm not ready yet. I don't want to do it."
As she turned 30, Laura began to think more and more about the test and decided she wanted to find out. But first, she had to undergo six months of genetic counseling.
"There are not many areas in life where you discover what your destiny will be, and it can be very difficult information to assimilate," he says.
a difficult truth
After six weeks of waiting for the test results, the day finally arrived. Laura says she felt "extremely nervous."
She had booked a table for lunch with a friend later, but went into the doctors' appointment alone.
"I told them, 'Let's get to the point.' They said, 'We're so sorry, it's not good news, you've inherited the gene.'"
She remembers "almost a blurry white noise, just sitting there."
I left the room and my friend started crying uncontrollably. But Laura didn't react. "We went to eat and it was great. I don't know if I took it in at all."
Reality hit me later. "I was furious. I felt like it was so unfair. I was so confused about how I was supposed to live now. How do you live with that knowledge?"
Laura began to feel the need to return home to the United Kingdom, especially because her sister was pregnant. "There's no point... living on the other side of the world when she's having a baby."
However, his travels around the world continued as he participated in medical trials before and after his diagnosis.
"It was very positive to be able to participate in something that arose from such a negative situation," he says.
The magic of small things
Laura is 43 years old, three years away from the age at which doctors projected she would begin to notice symptoms.
"I keep waiting for something that will allow me to realize it. I suppose one day I will start to get worse, but that doesn't stop me from sleeping," he says.
She feels "grateful and very lucky for the people she has in her life." But, meeting someone has become difficult.
"Do I tell him? Don't I tell him? At what point do I tell him? And, in most cases, when I've told him, it's over," he says.
However, she says she has been proven wrong.
"They have shown me that I can be loved despite this. It fills my heart with tranquility and joy."
Laura says she had always "naively assumed" she would be a mother.
"[It's] one of the few things I never doubted I would be good at and wanted to do. It's hard... but there's no point in doing it. It wouldn't be fair," he says.
For Laura, life now is about connecting with the things that "make her happy."
"It's not about grand aspirations. It's not that I want to see the Grand Canyon... Now I want to spend time with the people I love and who make me feel safe."
"I love nature. I love being outdoors. I'm obsessed with being in the water. It sounds so cheesy, but... I think it's really the little things that are the big things," she says.
"I hope to have some wonderful years in this world...drinking champagne and eating oysters, two of my favorite things."
This article was originally written in English and we used an artificial intelligence tool to translate it. A BBC journalist reviewed the text before publication. Learn more about how we use AI.
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