Based in Lancashire
‘Hi, I’m Amanda and I was born in Bury but now live in Wigan, Lancashire with my husband Daniel and stepdaughters Emily and Sophie. I live with the impact of mitochondrial disease daily and want to share my story to help increase understanding and support not just for me but for everyone who’s affected.’
Like many people with mito, my journey with the condition is long and quite complicated. It could fill a book!
The short version is that at just 2 years old I had a fall from which I couldn’t get up. I was taken to A&E but no cause could be found. These episodes continued through my childhood, but I was nearly 18 before we finally got a diagnosis. A muscle biopsy was taken at Salford Royal hospital and the specialist centre in Newcastle eventually identified that I have a form of mito.
The fault is with the MT-ATP6 gene which is part of the mitochondrial DNA. My mum and two younger sisters also have the faulty gene but don’t have any symptoms.
It affects my legs mostly with stiffness and pain
Sometimes they just 'go' which is pretty scary.
Falls and broken bones are a regular part of my life. I’ve had three in each foot and three in my right leg. Mito causes me to have osteoporosis too which of course doesn’t help and fatigue due to the lack of energy my body is able to produce. I struggle with short term memory as my brain is impacted as well. Some symptoms can be managed with medication and I have regular physiotherapy. I need to use a wheelchair and a walking frame at times.
Before the condition progressed,
I enjoyed being a nursery nurse.
Now I love to read – mostly romance novels – and really enjoy comedy with Michael McIntyre and Miranda Hart being two of my favourite comedians. Our beautiful cats Layla and Leo bring me a lot of pleasure too and add to our busy household.
Thanks for reading my story.
I'd love for more people
to be aware of mito.
Even medical professionals
are unaware of it sometimes.
… and that can be a bit disheartening. Recently a paramedic who was helping me knew instantly that it was a condition affecting energy production. I was so pleased that he could explain it to his colleague and I didn’t have to!
More than anything
we need a cure.
My mission is simply to
help make a little difference.
If I can raise even just a few pounds and help a few more people become aware of mitochondrial disease that will be brilliant.
I’d be so grateful for any support you are able to give. Thank you.
Amanda's Mito Mission
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