Would you take a genetic test that could reveal, with near certainty, whether your life will be cut short? Laura Sides did — and the result reshaped the rest of her life.
Diagnosed with the London Variant
Sides was offered a test for the rare form of early-onset Alzheimer’s disease that her father was diagnosed with in his 40s. She spoke to Dr Sian Williams, host of BBC Radio 4’s Life Changing podcast, about her decision to take the test and how it has shaped her life since.
Growing up, Sides says she always felt close to her dad because they had a similar nature
. He was a GP and, she says, the most amazing doting father
. When his Alzheimer’s symptoms became more severe, she dropped out of university to care for him. We did have a really lovely time,
she says, recalling trips to a lighthouse and collecting coasters. I’d run him baths and just play music and pour jugs of hot water over his head and he loved it,
she says. She had just celebrated her 21st birthday when she began caring for him.
At a hospital appointment with her father, a doctor told Sides she had a 50/50 chance of developing the same condition, known as the “London variant” of early-onset Alzheimer’s. All I could think was, that’s a toss of a coin,
she says. I just pushed it really, really deep down.
Her dad died in 2009, just a year after her mum. All of a sudden I got such an overwhelming urge to leave,
she says, so she booked a solo around-the-world trip and eventually settled in Melbourne, Australia. It was there that thoughts of inheriting her dad’s condition started creeping in
, and in 2013 she saw a specialist who told her a test could determine with 99.999% certainty whether she would inherit the early-onset dementia. If she carried the gene, her expected age of decline would be 46 to 48, he said.
Seeking Genetic Counselling
I just thought, I’m not there yet. I don’t want to do that,
she says. But as she entered her 30s, she thought about the test more and more and decided she wanted to know. First, she underwent six months of genetic counselling. There’s not many realms in life where you find out your fate and it can be very difficult information to process,
she says. After a six-week wait, the results arrived on a day she describes as making her feel extremely nervous
.
The test confirmed she carries the gene. I was just too confused at how I was meant to live now. How do you live with that knowledge?
she says. Sides has since taken part in medical trials around the world, before and after her diagnosis. It felt like such a positive to be involved in something out of such a negative situation,
she says.
Returning Home for Family Reasons
She eventually felt a pull back to the UK, especially once her sister was pregnant. It doesn’t make sense… to live on the other side of the world when she’s going to have a baby,
she says. Today, Sides is a chef who owns a cafe, restaurant and catering business with two friends. She is now 43 — three years from the age doctors predicted she will begin to notice symptoms. I keep waiting for something to sort of hit home. I guess one day I’ll start declining but that doesn’t keep me up at night,
she says. She is grateful and so lucky for the people in her life
, though meeting anyone new is hard: Do I tell them? Do I not tell them? At what point do I tell them?
