Jordan Adams had a 50% chance of developing a fatal brain disease. He decided that knowing would be better than running from it
When Jordan talks about his mum, his voice softens. He remembers her as warm and bright – “The happiest person to be around,” he recalls.
When Jordan was 13, things began to change. His mum, Geraldine, became quiet, withdrawn, and forgetful. At first, the family thought it was grief, as Geraldine had lost her father three years earlier.
One weekend, Geraldine called Jordan’s sister asking why she wasn’t waiting outside school to be collected. But it was a Saturday. “She’d never got something like that wrong before,” he says. “She was always there for us, and always on time. It was just so out of character.”
Unbeknownst to Jordan, their dad had already started seeking help. His wife’s worried friends encouraged him, because they’d noticed the same unsettling changes.
What followed was a long stretch of uncertainty, with appointments, scans, and conflicting diagnoses. Then, at just 47 years old, Jordan’s mum was diagnosed with FTD: a rare, hereditary form of dementia. “Dad sat us down and told us she had six to ten years,” recalls Jordan. “There was no cure. No treatment. We just had to give her as much love as we could.”
IN YOUR GENES?
The next six years were harrowing for the whole family. Together they cared for Geraldine as the illness advanced. Eventually, she forgot how to drive, how to dress for the weather, and even how to recognise her own children. “Some things I had to do for her, she would never have wanted me to do,” says Jordan. “But we did them because we loved her.”
Sadly, Geraldine died at home on 14 March 2016, in the same room where, six years earlier, Jordan and his siblings had been told about her fate. Jordan was only 20.
Grief hit each sibling differently. Jordan went down the route of partying and drinking; his brother struggled with anxiety; and his sister became convinced she would inherit the same condition. “We all coped in different ways,” explains Jordan. “But none of it was easy.”
In the end, Jordan left adolescence carrying a kind of trauma no young man should shoulder: grief, guilt, exhaustion, and the knowledge that FTD could be waiting for him.
WOULD YOU WANT TO KNOW?
Jordan didn’t. Not at first: “I’d always said I didn’t want to know.”
His sister Kennedy did. The spitting image of her mum, she believed she carried the gene and was determined not to pass it on. In 2018, she received the news she was not a carrier. The relief was overwhelming.
Everything Jordan had been burying rose to the surface. His sister could move forward and plan her future, while he felt he couldn’t. “I’d bottled it up for so long,” he says. “After Kennedy’s result, my life unravelled. I couldn’t live with the uncertainty anymore. I needed the answer.”
A WEIGHT OFF
Jordan began the genetic testing process and, in September 2019, aged just 23, he was told he carried the MAPT gene mutation. He would likely develop FTD in his forties. Strangely, he doesn’t describe the news as devastating. “For the first time, I knew where I stood,” he admits. “It felt like a weight off my shoulders. I could make decisions. I could actually live.”
He began to see the diagnosis not as a countdown, but as clarity, which he says allowed him to move on with intention. He threw himself into advocacy and research, participating in studies at UCL and fundraising for Alzheimer’s Research UK. Alongside his brother Cian – who in 2023 learned he also carries the gene – Jordan channelled his fear into action, raising funds and awareness.
He describes his diagnosis not as a life sentence, but as “a licence to live. I understand why people think knowing is worse but, for me, not knowing hurt more.”
CAN YOU OUTRUN A GENE?
Since his diagnosis, Jordan has had to make deeply personal decisions. He married his wife Annie in 2023, partly because of his understanding of time. Together, they’ve had to confront choices most couples never face. When Annie unexpectedly became pregnant, they agreed they could not knowingly pass on the gene. After genetic testing confirmed the baby was a carrier, they made the heartbreaking decision to terminate the pregnancy: “It was the toughest decision of our lives,” says Jordan, his face full of emotion.
They’re now pursuing IVF using pre- implantation genetic diagnosis, so they can end the hereditary line once and for all.
It’s just one example of how Jordan has to think about the future in ways most people his age never do. He’s considered care plans, financial provisions, wills, and even the songs he’d like at his funeral. He’s also made the decision to live through the disease as openly as possible, hoping his experience will contribute to research that may one day help others.
If you had a 50% chance of inheriting a terminal brain disease, would you want to know? Most people say they wouldn’t, and Jordan understands why. But he also knows the power of turning towards the truth, rather than away from it.
“Knowing gave me my life back,” he says. “It gave me clarity, purpose, and a reason to make the most of every day.”