Two brothers have shared their experiences of being diagnosed with a rare form of dementia in their twenties.
Brothers Jordan and Cian Adams, aged 28 and 23, saw their lives dramatically changed after discovering they had inherited frontotemporal dementia (FTD) from their mother.
Frontotemporal dementia (FTD) is a rare type of neurocognitive disorder that can often be hereditary, typically due to a single “faulty” gene passed down from parent to child.
This condition is referred to as familial frontotemporal dementia (FTD), affecting 10 to 15 out of every 100 individuals diagnosed with FTD, according to research conducted by Alzheimer’s UK.
Following the death of their mother, Geraldine, from the condition in 2016 at the age of just 52, the brothers and their older sister, Kennedy, decided to pursue genetic testing for the disorder.
Kennedy eventually discovered that she had not inherited the condition, while Jordan and Cian received the heartbreaking news that they were carriers of the gene and would likely develop frontotemporal dementia later in their lives.
Unlike other forms of dementia, frontotemporal dementia (FTD) is usually diagnosed at a younger age, typically between 45 and 65 years old.
Having witnessed the challenges their “loving, generous, and vivacious” mother faced, the brothers are now determined to make the most of their “15 good summers” while also working to raise awareness about the condition.
“Our lives may be shorter than most, but this has made us both determined to maximize the time we have,” Jordan shared in an interview with MailPlus, noting that the diagnosis has granted him a ‘license to live.’
“I wish a million times that this had never happened, that we’d never had to face this,” Cian remarked.
“It’s terrible, and I wish it weren’t true, but it has provided us with purpose and an opportunity to make a difference in the world.”
The brothers are also conscious of the risks of transmitting the condition to their own children. Jordan and his wife, Agnes, faced the heartbreaking decision to terminate a pregnancy after learning that the fetus carried the mutated gene.
“My partner and I discovered that she was pregnant. However, we wanted to make an informed choice, as we didn’t want the condition to be passed on to our children,” he explained in a previous interview with Good Morning Britain.
“Unfortunately, we went through a phase of genetic testing for the child and discovered that they were a carrier of the gene.”
“Therefore, we unfortunately had to terminate that pregnancy because we didn’t want that child to experience what we went through during our childhood.”
The brothers, both avid runners, have chosen to take on a challenging run from John O’Groats in Scotland to Land’s End in Cornwall to raise funds for Alzheimer’s Research.
As of now, Jordan and Cian have raised over £150,000 and aim to collect approximately £1 million for the charity over their lifetime.
