30-year-old at risk of early onset dementia shares heartbreaking reality of ‘life starting to end at 40’
A 30-year-old man who has been told he has a gene that means he'll develop symptoms of early-onset dementia in his 40s has shared the tough reality of what he's facing.
Redditch man Jordan Adams was just 15 when his mum Geraldine was diagnosed with frontotemporal dementia, an uncommon type of dementia with a life expectancy of between seven and 13 years after symptoms first start showing.
Someone with it can experience speech difficulties, personality changes and a lack of mental abilities, and Jordan's mum died when she was just 52.
Sadly for Jordan and his brother Cian they inherited a rare gene that means they'll develop symptoms in their 40s, and they are raising money to support the Alzheimer Society of Ireland and their own non-profit group FTD Brothers Foundation.
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You can donate to their efforts here, with Jordan planning on running 33 marathons in 33 days to raise money, while he shared the things that worried him most about it.
Jordan explained in an Instagram post that knowing he'll get dementia in his 40s had him 'terrified', as he fears that he'll 'forget his wife's name' and reach a point where he no longer recognises her.
Other things that scared him were 'losing the memories that mean everything', 'becoming a burden to the people he cares about the most' and never getting the chance to be the dad he'd 'dreamt of being'.
He explained that the child of a carrier of the mutated MAPT gene that can cause early-onset dementia has a 50 percent chance of inheriting it, and that Jordan and his partner Agnès couldn't continue with a pregnancy after they discovered that the baby had the gene.
The 30-year-old shared that he feared for his family as they'd see his own deterioration and have to care for him, then do the same for his brother Cian and attend both their funerals while both men might 'have no clue who each other are'.
He feared the impact it'd have on his sister Kennedy's family, who'll witness the changes he saw in his mum.
His rallying cry appears to be 'f**k dementia', as he said: "I’m on a mission to build a legacy that gives my family a focus when I’m gone, one which can continue to help those affected by dementia.
"I hope through what we build through this incredible community will mean that when that time comes you will support my family when they need it most - my wife, my sister, my nieces & if I’m lucky enough my own children.
"Family has got me this far and I’m going to need this one to make it any further on this journey."
While he's afraid of all the things to come, Jordan insisted he'd 'continue to use that fear to live with purpose'.
Jordan's first of 33 marathons will be the London marathon on 26 April, and he plans to run it with a fridge on his back.
Topics: Mental Health, Charity, Health
Joe Harker