Skip to content

Mitochondrial Disease Week: Clive Mockett shares his story

Mitochondrial Disease Week takes place every year between 19-25 September and marks a global opportunity to raise awareness of the condition.

Clive Mockett, aged 56 and from Nottinghamshire, lives with Mitochondrial Myopathy, a condition he was diagnosed with when he was in his mid-20s.

Clive had been experiencing a severely-drooping left eyelid that returned even after corrective surgery. The eye disorder turned out to be chronic progressive external ophthalmoplegia (CPEO), which is a type of Mitochondrial Disease.

On a daily basis Clive experiences muscle aches, spasms, cramps and nerve pain. He says he often falls over because of his weak leg muscles, can no longer close his eyelids properly, and lives with extreme fatigue.

Clive said that Mitochondrial Disease Week is an opportunity to educate the public about what it’s like living with such little energy and experiencing daily pain. On a bad day, he struggles to even hold a toothbrush.

Clive said:

I describe my condition and energy levels with a glass of water. Normally a person’s glass would be filled to the brim and constantly refilling as they go about their day. My glass only has splash of water in it. Once it’s gone, it’s gone for hours or even days.

Clive hopes that increasing awareness of the condition will help people understand the reality of living with a muscle-wasting condition. On Saturday 25 September, monuments across the world including from as far away as Canada and Australia will shine green as part of an initiative to ‘Light Up for Mito’.

Clive says he has received invaluable practical and emotional help from MDUK who have supported him over the years.

MDUK have always been there to answer any questions about my condition, whenever I needed them. In fact, it was a representative from the charity came to my Disability Living Allowance tribunal and proved my claim for the benefit was valid due to my condition. I would never would have won that tribunal if it wasn’t for MDUK’s support and expertise.

Join the Muscular Dystrophy UK community

Share your experience and find advice from others with similar conditions.