After years spent in pain and struggling for a diagnosis, Karl Johnston felt relief when he was confirmed as having a little-known condition where the brain effectively slips into the spine. Here, he shares his story.
“Some dads get to put their children on their shoulders, but I’ve never got to do that.”
That is just one of the day-to-day realities facing Karl Johnston, whose condition, Chiari Malformation Type 1, means his brain is effectively slipping into his spine.
For eight years, Karl had experienced a catalogue of symptoms, including intense and debilitating neck pain, light-headedness, fatigue and numbness in his arms, but without securing a diagnosis of his condition.
But now, the 35-year-old admits he feels some relief at the knowledge he has Chiari Malformation Type 1, as devastating as the diagnosis was to receive.
“A lot of people felt sorry for me when I finally got a diagnosis, but it was a relief because I’d been telling people that I was suffering for years and they hadn’t believed me,” says Karl, from Wallasey, on Merseyside.
“You start to question yourself about things. Just knowing takes a lot of the weight off you.
“Some days the pain is so much that it’s difficult to move around and all I want to do is lie down.”
The biggest difficulty emotionally, says Karl, is the impact it has on his ability to play with his daughter Seren.
“It’s devastating when she wants to play and I’m not up to it,” he says.
“Some dads get to put their children on their shoulders, but I’ve never got to do that.”
While Chiari Malformation Type 1 is most commonly diagnosed in adults, it is believed to often be present from birth.
Many people with the condition are asymptomatic, meaning it is only found if they have an MRI scan.
Karl had symptoms from when he was a teenager, but getting a diagnosis was difficult due to the lack of awareness around the condition.
He is now determined to help raise awareness of Chiari Malformation Type 1, in the hope that others may be able to secure a diagnosis quicker than his.
“There needs to be a way to make doctors and people in general more aware of these rarer conditions because otherwise people just fall through the cracks,” says Karl.
The dad-of-one has been supported by The Brain Charity, a national charity based in Liverpool that supports people with all forms of neurological conditions. Statistics show that 1 in 6 people in the UK is currently living with such a condition.
The charity recently told NR Times that demand for its services had soared by over 70 per cent since the start of lockdown in March, with predictions that the numbers of people needing support with issues including mental health, Long Covid and employment rights would grow further still.
Having turned to the charity last year, Karl is now getting the practical and emotional support he needs to get on with his life.
“The Brain Charity helped me get a better understanding of what was going on with my condition,” he says.
“It has felt like so many people haven’t taken me seriously but The Brain Charity has.
“They didn’t pity me but tried to understand what I was going through.”
