Brothers both in their 20s tragically diagnosed with rare form of dementia
Topics: UK News, Health, Mental Health, Science
Poppy Bilderbeck
Featured Image Credit: Instagram/ @jord_adams
Topics: UK News, Health, Mental Health, Science
Two brothers have been diagnosed with dementia while in their twenties, but are turning their 'pain into power'.
Jordan and Cian Adams started noticing 'significant changes' in their mom's behavior, and after several 'incorrect diagnoses', she was eventually told she had early-onset Frontotemporal Dementia (FTD) - the same condition actor Bruce Willis has.
But little did the 28 and 23-year-old brothers from Worcestershire, UK know at the time, they'd end up facing the same 'horrible' diagnosis within five years of one another.
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When Jordan and Cian's mom, Geraldine, became 'less outgoing,' her mood 'lowered', and she began experiencing 'numerous lapses in her memory', the family knew 'something wasn't quite right'.
A JustGiving page raising money for Alzheimer's Research UK organized by Jordan continues: "After months of back and forth with different GPs and consultants, an incorrect diagnoses of depression, different mental health issues including a silent stroke, our mom was eventually told that she had ‘early-onset’ Frontotemporal Dementia (FTD) on the 23rd June 2010, and it was later that evening that our dad had to break the news to us that mom was terminally ill and that her health was going to deteriorate over a 6–10-year period."
As a result of the 'incredibly tough responsibility' that lay on him, Jordan and Cian's dad, Glenn, didn't tell them the condition was 'hereditary' and that they and their sister Kennedy had 'a 50 percent chance of inheriting the same FTD' when they reached their mom's age.
Sadly, Geraldine's condition deteriorated, and she became unable to drive, would get 'confused as to wear she was', and eventually became 'bed-bound' until she passed away on March 14, 2016 at the age of 52.
After finding out the condition is hereditary, Jordan and Cian's sister Kennedy went and got tested and it was confirmed she 'would not have to live with the same dementia' as their mother, and then Jordan and Cian decided to get tested too.
In September 2018, Jordan discovered he was 'a carrier of the faulty copy and he would have to live with the same FTD' as their mom. In February 2023, Cian discovered he too is a carrier.
FTD not only leads to memory loss, but can cause behavioural changes, alongside a decline in speech and language ability and also mobility.
The JustGiving page continues: "Both brothers will have to live with FTD in their lifetime, most likely becoming symptomatic in their early 40s and losing their lives within 10 years of diagnosis."
However, Jordan told Mail Plus while the brothers may ultimately have '15 good summers' left, rather than viewing the diagnosis as a death sentence, they're trying to see it as having been given a 'license to live', making them 'determined to make the most of the time' they have and to 'raise awareness and funds to fight this horrible disease'.
Earlier this year, the brothers ran the length of the UK to 'raise the bar in our efforts to raise awareness and funds for groundbreaking research which can ultimately lead to a cure for all types of dementia'.
In a post to Facebook, Jordan wrote: "We each have experienced depths of depression, growing anxiety & the overflowing anger of injustice. Why us? [...] But instead of wallowing in self pity. Cian like me, made the decision that day to turn that pain into power and I could not be more proud of how he has responded.
"Together, we are turning that nightmare hand life dealt us into a dream to raise 1 Million Pounds towards research that we hope will find a cure and put a stop to families all over the world having to go through what we have endured.
"So here we are 18 months on from life kicking us in the bollocks again, saying we’re still standing. We carried the boats. They don’t know me son. Best of all…. we’re just getting started."
If you've been affected by dementia or Alzheimer's and would like to speak with someone in confidence, contact the Alzheimer's Association via 800.272.3900 open 24 hours seven days a week.