Kim's story

It all started a few years ago after intensive physio for breaking my leg. Then out of nowhere my right leg and foot started getting weak and having pins and needles. In shock I went to see my local GP and she said something’s not adding up here.

After a year of intensive tests on my heart, eyes, hearing, brain, muscles and every other thing you could think of, they were still stumped. My neurologist was at a loss so invited many different specialists to come as a group to visit me. One such doctor was a metabolic specialist, and after consultation and skin muscle biopsies they came to Mitochondrial disease as the most likely answer. DNA testing can’t match my strain and testing isn’t advanced enough for that to be a possibility in my lifetime.

I’ve had to quit working in any capacity. I have neuropathy in my legs, feet, eyes and ears. Fatigue means I’m constantly tired and I have ataxia so I have almost no balance. Mitochondria is a degenerative disease with no treatment or cure. There is no shot, pill, drugs that can halt symptoms either. Every vitamin or therapy that might help isn’t covered by government as it’s not a treatment yet just a ‘try and see’ option. A lot of financial help like a basic benefit isn’t available to me as my partner works. Knowing I’ll only get worse, any therapy is beyond my financial reach which means a lifetime of doctors appointments that go nowhere and I’m a financial strain on my family.