Hello, I’m John, from Batley in West Yorkshire. This is the story of how I went from being disbelieved as a youngster to finally getting a mitochondrial disease diagnosis in my 20s.
Throughout my school years I struggled due to being unable to tolerate much exercise compared to my peers. It led to repeated bullying in high school for being ‘weak’. Managing a pen or cutlery was difficult too and was attributed to ‘clumsy child syndrome’.
The exercise intolerance continued into adulthood, and I struggled with any physical roles at work.
One day after eating out with friends in Leeds I had what I thought was a severe panic attack and taken to hospital. My heart rate was all over the place and couldn’t be put down to anxiety, so I was referred to a local neurologist. He was determined to get to the bottom of what was wrong and conducted many tests over 4 years.
As did reflex tests – but nothing was ever conclusive. Eventually, a chat with Professor Doug Turnbull about my case led to an invite to the specialist mitochondrial disease clinic at Newcastle.
My brother Eddie, who’s two years younger, accompanied me. Within 5 minutes of chatting, the Professor said he suspected that we both had a form of mito. Genetic testing soon confirmed it was a rare variant involving the GFER gene. The diagnosis was mostly a relief. After years of not being believed, of questioning if it was in my head, here was vindication of a physical health issue which had been causing my symptoms all along.
Currently, everything is stable and well-managed health-wise. I have a great job at King’s Secure Technology, Bradford and lots of interests including music, photography, reading, TV, socialising and travel.
of mitochondrial disease in both the general public and medical professionals. It’s important that more people are aware of the condition.
Any funds raised by John’s mission goes to My Mito Mission’s
central funds to be granted towards research and support projects
to benefit everyone affected by mito.
Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and valued. From running a race to holding a bake sale, hosting a collecting can to giving out John’s Mito Mission leaflets – there are so many ways in which you can get involved.
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