Based in Perth, Perthshire
Hello. I’m Bethany, 26. I hope that you’ll take the time to read about my journey so far with mitochondrial disease.
My health was okay in early childhood but when I was around six, I became so ill with stomach upsets, vomiting and dehydration I needed to be hospitalised. Because my mum was diagnosed with a mitochondrial disorder called ‘MELAS’, I was investigated for the condition. Blood tests revealed a fault with the 3243A>G gene which meant the same diagnosis for me..
MELAS is short for ‘Mitochondrial Encephalomyopathy, Lactic Acidosis and Stroke-like episodes’
and it affects many of the body's systems
… but particularly the brain, nervous system and muscles.
My mum’s diagnosis has since been changed to MIDD (Maternally Inherited Diabetes & Deafness) and is caused by the same gene fault. As the name suggests, her main symptoms are diabetes and deafness. This form of mito is maternally inherited so it’s thought my older brother has it too – but mildly, as he’s asymptomatic. Unfortunately for me, mine’s not so mild and I spent a lot of time in and out of hospital as a child.
Since becoming an adult, I still have gastric problems and now also debilitating headaches, muscle pain
and really awful fatigue.
I work part-time at Asda which can be a struggle with my health challenges but I try to carry on and enjoy life the best I can.
My big passion is music – specifically, Queen. I heard ‘Don’t Stop Me Now’ as a teenager and loved it, got into all their songs and haven’t stopped listening! I’m a dog-lover too and enjoy spending time and walking with my mum’s lurcher, Benji and springer spaniel, Oscar. … I’m a dog-lover too and enjoy spending time and walking with my mum’s lurcher, Benji and springer spaniel, Oscar.
Thanks for reading my story.
I'd love for more people
to be aware of mito.
My mission is to help others
understand the condition better.
So many people still haven’t heard of mitochondrial disease, let alone know what it is.
It’s hard being ill, but it makes it even harder to have
something little known and not well understood
Mito is invisible a lot of the time, which doesn’t help. It would be so much easier if more people were aware of mito and understanding about its effects.
I’d like to play even a small part
in helping to make that happen.
Bethany's Mito Mission
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support Bethany’s cause.
Whether you support Bethany’s mission, any other single mission or My Mito Mission as a whole – it’s all the same great cause.
Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and valued. From running a race to hosting a bake sale, homing a collecting can to giving out Bethany’s Mito Mission leaflets – there are so many ways in which you can get involved.
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