Based in Sheffield, South Yorkshire
Hello. I’m Louise and I live in Sheffield. Please take a few minutes to read about my journey with mitochondrial disease.
I was born in Sheffield in 1982, and my health issues became apparent quite early. However, when I was 11, my parents’ health was of most concern – both were in hospital with very serious conditions.
Mum had suffered two major strokes and dad was diagnosed with bowel cancer. Mum needed care until she passed away from MELAS at just 55 in 2006. Dad eventually had a major op which removed the cancer but sadly, it returned in 2021 and he died in the December. It has been incredibly difficult to loose both my parents at a relatively young age, especially with my own health challenges.
MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes)
was discovered around the time I was born.
It’s a form of mitochondrial disease, and is caused by a fault on the 3243A>G gene. Both me and mum turned out to have it.
The diagnosis explained my hearing and vision impairment, fatigue, weakness, balance and coordination problems plus the mild cognitive difficulties I experience.
Until 2010 I was able to work as a Nursery Nurse, which I loved, but had to give up as my health deteriorated. I volunteered in a charity shop for 10 years afterwards, but that also became too difficult.
The weakness in my wrists and ankles now means
that I need splints and crutches to walk.
My faith is massively important to me. Along with my friends at church – who are like family – it gets me through everything. I attend the Sheffield Church of the Nazarene and Mount View Methodist Church.
I joined the Girls Brigade at just 5 years old. Now I help lead 50 girls between the ages of 5 and 17 in a whole range of activities. We have great fun playing games, doing crafts and learning new skills as well as performing a pantomime or show each year where we also crown our May Queen. My church commitments keep me pretty busy, but I also enjoy crafting in my spare time including knitting, card making and papercraft.
Thanks for reading my story.
My mito mission is to increase everyone’s understanding about mitochondrial disease
How it comes in lots of different forms and impacts people in different ways, and at different ages.
I also want to raise funds for vital research.
Mitochondrial research could bring treatments for common illness like cancer
… as well as for mitochondrial disease.
Both have affected my family so much.
It’s a really constructive way that I can make a difference, and I hope people will join me.
Louise's Mito Mission
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