Hi, I'm Jason, and my story shows how timely and correct diagnosis can be the difference between life and death to somebody with mitochondrial disease.
Hi, I’m Jason from Chatham in Kent.
I had always had deformity in my feet and had been seeing a podiatrist for years but I managed to work as a groundskeeper for most of my life. I was even a tree surgeon in my younger years!
In 2022, after my first foot surgery, I started to suffer with swollen legs, but when I went to the hospital, they sent me home without investigating the root cause.
…a swelling of the muscles as they break down and release their contents into the bloodstream.
One day about three weeks after I had undergone a second surgery on my foot, I collapsed at home. I woke up with both of my legs swollen and inverted. I had rhabdomyolysis again, but this time it has been delayed by weeks rather than occurring immediately after surgery.
Because mitochondrial disease is a disorder of the respiratory chain, this means that my muscles don’t get enough oxygen under sedation, which can be very dangerous and potentially life-threatening. I also experienced kidney failure.
My diagnosis came as a result of these two instances of rhabdomyolysis, and because one of my family members mentioned they have mitochondrial disease.
Doctors recommended genetic testing, which they recommended for my mum also. She ended up getting her results back before I did – which revealed that we did indeed have mito. Luckily, she doesn’t experience any symptoms, but my sister and uncle are also impacted.
My uncle, Gary, actually experienced very similar symptoms to me, and his health began to deteriorate at a similar age.
Thankfully, my children and grandchildren are not affected.
I’m a big Manchester United fan and I love spending time with my family, especially my grandkids. I’m a keen darts player and really enjoy learning about The Titanic!
…for timely and correct diagnosis of mitochondrial disease.
I also want to try and reduce some of the isolation that people with mito feel upon diagnosis – awareness is key.
Any funds raised by Jason’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 Jason’s Mito Mission leaflets – there are so many ways in which you can get involved.
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