Hello, I’m Rhona from Elderslie in Renfrewshire, Scotland where I live with my husband Graeme, sister Aileen and our adorable pug Jinty. My story illustrates how mito can be misdiagnosed over many years...
Throughout my school years I was incredibly sporty – basketball, hockey, football, athletics – I loved it all. When it came to endurance however, I couldn’t excel, but we didn’t read much into it.
At 16, on a school trip to France I fell off a horse and was concussed and ill for the whole week. The ill health and fatigue stuck.
I qualified and worked as a paediatric nurse by managing the condition as best I could. I had to focus on resting and building strength between shifts but it soon became obvious that night shifts were simply impossible for me.
I just knew that medically, I wasn’t on the right track. A book subtitled, ‘It’s Mitochondria not Hypochondria’ by Dr Sarah Myhill added to my conviction. My family history including deafness down the female line which was another pointer. I paid privately for mitochondrial function testing. The results showed severe dysfunction and high lactate levels. I pushed yet again for a specialist referral. Although met with the usual scepticism, it was eventually agreed and I saw a specialist neurologist through the NHS.
In 2015, after 26 years of misdiagnosis and living with labels like ‘lazy’ and ‘all in the head’, I was diagnosed with mito – the MELAS 3243 a>g mutation. I was a bit shocked, but relief was the overriding feeling. This entirely explains all my symptoms – the poor muscle function and weakness, exercise intolerance, digestive issues, severe headaches, balance and memory problems, amongst many others.
…about mito at several conferences the following year in Newcastle and the Netherlands.
Unfortunately, a breast cancer diagnosis in 2018 meant rounds of cancer treatment. Yet one of the worse aspect for me was people’s continued ignorance about mito. It took me right back to all those years where it wasn’t believed or acknowledged. I was even referred for psychiatric counselling for wanting to be mindful of my mitochondrial health alongside the treatment plan.
Whilst striving for better understanding about mitochondrial disease, I am determined not to be defined by the condition. I live life to the full around my health challenges.
The mito symptoms mean I can’t enjoy reading as much as I did but Graeme – who I’ve known since childhood – will read to me so we can enjoy books together. I still enjoy many sports, though watching now rather than playing! I occasionally use a mobility scooter or wheelchair to help me to get about more easily.
My condition’s progressive but my strong faith, family and determination continue to get me through.
…both at home and abroad. I absolutely loved this work and am heartbroken my health no longer allows me to do it.
Not just amongst the general public but also the medical community where I feel it is especially needed.
Any funds raised by Rhona’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 hosting a bake sale, homing a collecting can to giving out Rhona’s Mito Mission leaflets – there are so many ways in which you can get involved.
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