Faye Wylie

I loved bike riding when I was younger. But at age 7 my walking went a bit wobbly. I could actually run better than I could walk. However, despite having lost my brother to Leighs the consultant said I was ok.

Aged 12 I had some tests done including lumbar puncture, bloods, MRI, CT scan and other organs. However the biggest one, the muscle biopsy was the most traumatic. I walked into the hospital and left using a wheelchair.

That summer I spent the holidays in bed. I was sick, headaches, no appetite. I was taken back into hospital and put on a drip.

The headaches then lasted 10 years. Over those years something called delightful dystonia started. It feelslike muscles are twisting and pulling.it really hurts. Also tremors started.

Another symptom I find unbearable at times is the fatigue…the heavy weight of tiredness.

When I was 20 I founded Leigh Network. Which supports families affected by mito illnesses. I arrange meetings in the UK, with sometimes doctors in attendance the families to meet and share experiences. I love doing Leigh Network and helping families.

When I was 22 I achieved a lifetime dream of driving.

In 2013 I noticed my eyes weren’t seeing quite right so I had an eye test which led me back to hospital. After lots of tests I eventually found my optic nerve was damaged. Which meant I was severely sighted and had to give up driving

But I have to look at things positively at what I can do like Leigh Network

This is my story on mitochondrial disease please share.

Mine and SAMs story’s are so different but we have /had the same condition. 27 years on and still no cure.

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