Living With Mitochondrial Disease As An Adult

Hi, my name is Kim, and this is my story. It all started a few years ago after intensive physio for breaking my leg, at the age of 27.  Then out of nowhere my right leg and foot started getting weak. I then started experiencing pins and needles along with sharp shock symptoms. This caused me to see my local GP. After she examined me, she said something's not adding up here.  I then went on to have some intensive tests on my heart, eyes, hearing, brain, muscles and every other thing you could think of. They were still stumped. Mitochondrial disease has many other well-known conditions related closely such as ALS, Parkinson's, muscle dystrophic. My neurologist was at a loss, so invited many different specialists to come as a group and visit me. One such doctor was genetic specialist Dr Emma Glamuzina. And after consultation and skin and muscle biopsies they came to Mitochondrial disease as the answer. I'm still awaiting finalised DNA testing to give me an exact strain. This will help with family planning. I've had to drop my workload significantly to a load that I can manage, and I must set these hours myself.  I'm unable to drive a regular car and basically rely on others to assist with most things. I've lost a lot of independence. My partner works and travels overseas often so that makes it hard on me. I have neuropathies in legs, feet, eyes and ears. I have Audio processing disorder too. Ataxia, heat regulation and memory fog. Mitochondria is a degenerative disease with no treatment or cure. There is no injection, pill, or drugs that can halt symptoms either. I currently take cq10 and one other supplement for my condition which is not funded. My partner and I have applied for every rotary, government benefit and grant you can find. We qualify for nothing. However, I do have a mobility dog named Cooper from the Mobility Dog Trust.  Reason why I have is because “I’m young and I didn’t want a walker and I didn’t want a stick. I don’t have a wheelchair; I have a Mobility Dog. He keeps me going, he stops me having falls and he helps me when I need him”. Cooper and Kim were partnered together in April 2017 at the Mobility Dogs camp. And is trained to assist her when she falls to be a bracing system to help her back on her feet. Both ACC and winz tell us our income is far too high. One income is hard for two to live on in Auckland let alone knowing my condition will only get worse and require things like wheelchairs and more Dr visits as time goes on. Mitochondrial is unheard of for the majority of people. Most can't pronounce it but for those with or involved with it, it's called Mito. At worst its life threatening and at least it's a lifeline deterioration and most often constant additions of life limited symptoms. It's an invisible disease, to most I look picture of youth and health. But inside of me it's the opposite.

Kim is now 35. From this illness she also suffers anxiety.  She must take medication for this. Kim also finds it hard to socially fit in with others. As she finds people don’t know how to take her illness.