His father there were told his part brain slipping into his spine after consumption years trying to get a diagnosis for his secret neck pain, and now hopes to raise awareness for his condition.
Karl Johnston, 35, was tested by Chiari Malformation Type 1 – where the brain pushes down into the spinal canal – back in 2016.
He had suffered for eight years while trying to get to the bottom of his symptoms, including severe and debilitating neck pain, headache, fatigue and anxiety in his arms.
Karl, from Wallasey, Wirral, He said: “A lot of people felt sorry for me when I last got there judgment but it was a relief because I had been telling people that I was suffered for years and they did not believe me.
“You start questioning yourself about things. Just experience takes a lot of the weight from you.
“In some days the pain is so severe that it is difficult to move around and i just want to lie down.
“It’s devastating when my daughter wants to play and I’m not up to it.
“Some fathers get their children on their shoulders, but I’m on it that was never allowed to do that. “
Although Chiari Malformation Type 1 is most commonly diagnosed in adults, it is believed to be present from birth.
Many people have the condition asymptomatic, meaning it can only be detected if they have an MRI scan.
Karl had symptoms since he was a teenager, but it was difficult to diagnose due to a lack of awareness about Chiari Malformation – which meant his doctor had never treated another patient with the condition before.
Karl, who has epilepsy, has received help from The Brain Charity, a Liverpool-based national charity that supports people with all sorts of brain conditions.
Speaking to people at the charity from last year, Karl helped him understand how fighting for judgment has affected his life, and he now supports a charity Appeal #Sixmas to raise £ 6,000 for help 1 in 6 people with a brain condition.
Karl’s father-in-law followed: “The Brain Charity has helped me to better understand what was going on with my situation.
4 months ago“It has felt like so few people have taken me seriously but so is the Brain Charity.
“They didn’t take pity on me but they tried to understand what I was going through.
“There has to be a way to make doctors and people in general more aware of these rare situations otherwise people just fall through the cracks.
“The Six weeks The campaign for the charity will help support more people like me, giving them the much needed information about their conditions. “
This year, the Brain Charity has seen a 70 percent increase in referrals due to coronavirus pandemic, despite many fundraising events being canceled.
The charity is now appealing to people across the UK arrange and take part in sponsorship events based on number six – either almost or in a safe way with Covid – to help make it clear that one in six people has a brain condition.
You can also pledge £ 6 a month to support the Brain Charity to provide practical, emotional and social support activities for those with such conditions.