Karl, 35, was diagnosed with Chiari Malformation Type 1 – a surprisingly common condition where the bottom of the brain extends and puts pressure on the spinal cord, in 2016.
While the condition is most commonly diagnosed in adults, it is thought to often be present from birth and Karl had symptoms from when he was a teenager and spent eight years trying to get a diagnosis.
Many people with Chiari malformation are asymptomatic and it is only found if they have an MRI scan, but as well as intense and debilitating neck pain Karl suffered light-headedness, fatigue and occasional numbness in his arms.
The dad-of-1, from Wallasey, Wirral, said: “I tried doing high jump in school, but when I did my neck was in agony for weeks afterwards.
“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.
“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.
“It’s devastating when my daughter wants to play and I’m not up to it.”
Karl, who also has epilepsy and depression, reached out to The Brain Charity in 2019 and our information and advice team were able to provide him reading materials about his condition.
He added: “The Brain Charity helped me get a better understanding of what was going on with me.
“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 am going through.”