When I was 20, I my left eyelid started to droop. This was my first symptom of mitochondrial disease (mito), but it took 17 years for me to receive a diagnosis.
Based on my symptoms, it’s thought that I have had Chronic Progressive External Ophthalmoplegia (CPEO) – I’m waiting on genetic tests to confirm this. It affects my vision, and causes muscle weakness, pain in my shoulders, neck and hips, and difficulties with my digestive system.
When I was diagnosed, my doctor’s well-meaning advice was that I quit my job, move to the city, learn to read braille and prepare to live life as a blind person. But, I didn’t want to let mito define me.
Many people have asked me why I don’t get cosmetic surgery to correct my eye. They don’t understand that it’s not like a tummy tuck – getting surgery won’t fix my disease.
The disease gave me a life-changing decision: I could sit on the couch, being too embarrassed to go out in public, or I could get out there, have some fun and live life to the fullest. I’ve chosen the latter.
In 2016, my husband Andrew and I participated in ‘The Bloody Long Ride’ – we rode 1,300kms from Maryborough, Queensland to Sydney, New South Wales before taking on The Bloody Long Walk Sydney East.
In 2017, we took it even further – we rode the Brisbane Valley Rail Trail, completed the Bloody Long Walk Brisbane, and rode 1,600kms from Queensland to Canberra so I could compete in the National 24-Hour Solo Mountain Bike Championship, where I won gold in my age group!
When I listen to other people’s stories about mito, I feel lucky. By comparison, my symptoms are fairly mild. I’m determined to use my energy to raise awareness about mito, to share my story, and to live my life.