ROBERT Lilley was diagnosed with a rare flesh-eating condition 12 years ago – and has lived in “unbearable pain” ever since.
The 49-year-old has pyoderma gangrenosum, which causes large open sores to grow on his body and rot away his skin.
He said it makes his skin “red and ooze like raw pieces of meat” – and his lower legs will be scarred for life as a result.
“The pain is unbearable at times,” Robert, from Windsor, Berkshire, said.
“It’s like someone is sticking a red hot poker through your legs and wiggling it about.
“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.”
Robert has his wounds dressed twice a week by a specialist and can only walk with a cane.
“I also have to wear compression wraps on my lower legs to stop them ballooning,” he added.
“This can restrict my mobility. I have to use a walking stick and I walk very slowly.
“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, symptoms usually begin suddenly as either a small spot, red bump or blister.
This then turns into one or several painful and rapidly-growing ulcers, which can have purple or blue edges and ooze fluid.
Robert was diagnosed in 2012 after he went to see a dermatologist about an ulcer on his leg that wouldn’t heal.
He now takes morphine and steroids to help ease his agony.
“I currently take 60mg of morphine tablets twice a day with liquid morphine to top up when needed,” Robert said.
“I also take a number of other painkillers, spasm-reducing medication, and steroids to try to help.”
Despite it having such a huge impact on his life, Robert has no idea what triggered the illness.
He suspects he’s suffered with the condition since he was a child, as every small scrape or cut took months to heal.
Robert, who had to quit work as a DJ and barman as the condition restricts his mobility, said: “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.
“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.”
PYODERMA gangrenosum is a rare skin condition that causes painful ulcers.
It often develops due to over-activity of the immune system or following an injury or minor skin damage, such as a needle prick, biopsy or insect bite.
It can also be linked to a disease or illness, but it is not possible to catch it from another person.
Symptoms usually begin suddenly as either a small spot, red bump or blister.
This then turns into one or several painful and rapidly-growing ulcers, which can have purple or blue edges and ooze fluid.
Sufferers sometimes feel generally unwell and get a high temperature.
If you have an ulcer on your skin that is not getting better, speak to your GP.
Pyoderma gangrenosum is serious and needs to be treated quickly.
This is usually in the form of dressings to soak up any discharge, creams, ointments or injections, steroid tablets and immunosuppressants.
In the UK, one or two people per 100,000 will develop the condition every year.
