Hi I'm Clare. I live with my husband Paul and my Shih Tzus, Otis and Caspar in beautiful Northumberland. I'd love you to read my story about my journey with mitochondrial disease diagnosis & symptoms.
I had quite an active childhood but was referred to Sunderland Heart Hospital because of a heart murmur at around 8. I was always bad at PE, and I couldn’t run because of my heart.
I went to Newcastle University to study science, which I often found to be difficult to manage, because of my hearing – I used to have to record my lectures. Of course, I had no official diagnosis yet.
When I left university, I started working in pharmaceuticals. Suddenly, my heart issue reared its head, and I was sent for exercise tests with a cardiologist, an echocardiogram, and an ECG.
My lactic acid was always high & I had tachycardia, which showed that there were even more issues with my heart. I also had very bad chronic fatigue, and sadly I had to stop working.
…when I went to A&E at Newcastle RVI due to diabetic ketoacidosis. Mitochondrial specialists Professor Turnbull & Professor Walker came to visit me as they suspected mitochondrial disease. My visits to the mitochondrial clinic began around 2009.
My other symptoms at the time included deafness, a rare eye issue, and my diabetes, and my diagnosis made sense of my mum’s health issues, who was never tested before she passed away but had all the symptoms, and my grandma before her. I also have a sister who has been diagnosed, and another sister who sadly died at birth.
I’ve always resisted using mobility aids like a wheelchair, sticks, or a frame. I was embarrassed; I even resisted hearing aids. Now, I’ve got to the stage where I need them – and it’s been tough!
This sadly has had a serious impact on my mental health. I also suffer from retinopathy, an eye disorder characterized by progressive loss of central vision, due to degeneration of the optic nerves and retina.
…but I also need that support myself. Not enough support is available out there. I’ve experienced a lot of loneliness and isolation and found it hard to sustain friendships. I’ve suffered bouts of depression & anxiety over the length of my diagnosis.
My mission is to power that support, as well as awareness and research for mitochondrial disease.
Any funds raised by Clare’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 Clare’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Clare’s mission, choose a way that suits you below.
Regular donations are the most powerful way to support our vital work, allowing us as a small, high-energy charity to plan and build from a strong foundation.
We need a 1000 strong team of amazing people to donate any amount from just £2 a month. 1000 is a lot, but – one by one – we know that we can reach it. Find out more here.
For any other amount or frequency (eg weekly, quarterly, annual), simply contact us
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