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Need To Know > Fitness and health > ‘My leg is rotting away because of rare flesh-eating condition – it’s unbearable’
Man with rare flesh-eating condition endures unbearable pain from painful ulcers, causing severe mobility issues. Robert Lilley shares his battle with pyoderma gangrenosum.
Fitness and health

‘My leg is rotting away because of rare flesh-eating condition – it’s unbearable’

Hannah Phillips
Last updated: September 9, 2024 9:01 am
Hannah Phillips Published September 9, 2024
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Robert Lilley. (Picture: Jam Press)
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A man who has a rare flesh-eating condition says he is left in “unbearable pain”.

Robert Lilley has pyoderma gangrenosum which causes large open sores to grow on his body and rot away his skin.

The 49-year-old was diagnosed 12 years ago after he went to see a dermatologist about an ulcer on his leg that wouldn’t heal.

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His lower legs will be scarred for life because of the condition.

Robert has his wounds dressed twice a week by a specialist and can only walk with a cane.

“The pain is unbearable at times – it’s like someone is sticking a red hot poker through your legs and wiggling it about,” Robert, from Windsor, Berkshire, told Need To Know.

Man with rare flesh-eating condition endures unbearable pain from painful ulcers, causing severe mobility issues. Robert Lilley shares his battle with pyoderma gangrenosum.
Robert Lilley. (Picture: Jam Press)

“They’re very sore. It’s a burning stabbing sensation constantly and that’s after the morphine.

“They’re red and oozing like raw pieces of meat.

“I have to wear compression wraps on my lower legs to stop them ballooning.

“This can restrict my mobility. I have to use a walking stick and I walk very slowly.

Man with rare flesh-eating condition endures unbearable pain from painful ulcers, causing severe mobility issues. Robert Lilley shares his battle with pyoderma gangrenosum.
Robert’s legs after suffering from pyoderma gangrenosum. (Picture: Jam Press)

“I get them wrapped up and it’s like wearing two lead boots with all the bandaging, dressing and wraps.

“My muscles tense up. It’s like an elastic band that is fully tightened.”

Pyoderma gangrenosum is a rare skin condition that causes large, painful ulcers.

According to the NHS website, the main symptom of pyoderma gangrenosum is a large, painful ulcer on your skin.

Man with rare flesh-eating condition endures unbearable pain from painful ulcers, causing severe mobility issues. Robert Lilley shares his battle with pyoderma gangrenosum.
Robert’s legs after suffering from pyoderma gangrenosum. (Picture: Jam Press)

It usually starts as a small bump, spot or blood blister that gets bigger quickly and turns into an ulcer.

Robert takes morphine and steroids to try and help with the pain.

He said: “I currently take 60mg of morphine tablets twice a day with liquid morphine to top up when needed.

“I also take a number of other painkillers, spasm-reducing medication and steroids to try to help.”

Robert has no idea what triggered the illness.

Man with rare flesh-eating condition endures unbearable pain from painful ulcers, causing severe mobility issues. Robert Lilley shares his battle with pyoderma gangrenosum.
Robert’s legs after suffering from pyoderma gangrenosum. (Picture: Jam Press)

He suspects he’s suffered with the condition since he was a child as every small scrape or cut took months to heal.

He had to quit work as a DJ and barman because the disease affected his mobility.

Robert added: “I’ve had leg ulcers for about 25 years now, even when I was a child. Thinking back, any cut or graze, especially on my legs took a long time to heal.

Man with rare flesh-eating condition endures unbearable pain from painful ulcers, causing severe mobility issues. Robert Lilley shares his battle with pyoderma gangrenosum.
Robert wearing compression wraps on his lower leg to stop them ballooning. (Picture: Jam Press)

“I saw a doctor at my dermatology clinic who knew about the condition as my regular dermatologist didn’t know what was going on.

“I have to be very careful not to cut myself.”

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