Years of hell for man living with rare skin condition which left him unable to walk

A man living with a rare skin condition which left him unable to walk says he suffered years of hell.

Alan Bentley, 63, has had Olmsted Syndrome since he was a child, which causes agonising, hard callouses to form on his feet. He says the disorder – also known as mutilating palmoplantar keratoderma (PPK) – has caused him both physical and mental pain all his life.

Bentley, from Leek, Staffordshire, says the intense pain in his feet meant he was forced to crawl around on all fours like an animal in his home.

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The daily discomfort also made him turn to alcohol to cope, he admits – and he even thought about taking his own life in his 20s.

“There’s the ache, it throbs, then there’s the burning pain – it feels like fire," he says.

“You avoid standing in queues as all you do is go from one foot to the other to relieve the pressure.

“The pain is constant, the soreness when you put your feet down is unbelievable, from the moment you get out of bed.

“I'd go down the stairs backwards on my knees.”

Olmsted Syndrome causes thick skin to grow in areas like the palms of the hand, soles of feet and around the eyes and mouth.

The condition tends to get worse over time and often goes alongside other symptoms like pain, itchiness and abnormalities in joints and nails.

It also increases the risk of developing painful infections and even skin cancer.

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Bentley only received his formal diagnosis nine years ago through a genomics test, after a lifetime of suffering, and finally started on a treatment that worked for him.

He wants to raise awareness of the relief his diagnosis brought him and urge others to get a test for Rare Disease Day today (28th February).

“My goal is to see other people being diagnosed correctly and given the correct form of treatment, instead of being turned away," he says.

“My life is worthwhile if I can just help other people.”

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Bentley’s father, Tom, also suffered with the condition, but was relieved when all of his three children were born with no visible symptoms.

However, as Bentley grew up, hard skin started to appear on his feet and by the age of ten they were covered in callouses.

“I couldn’t play football and I loved football, I couldn’t do anything like that," he says. "It made me depressed and gave me a great feeling of isolation.”

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After leaving school he chose an office job so he could spend the majority of the day sat down and he made the decision to never have children to avoid passing it on.

"It was awful," he says. "I had no social life whatsoever. I wasn’t jiving away to Slade like the rest of my colleagues back in 1970s!

“It was a really miserable existence in many ways, but I just had to get through it.”

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Bentley attended chiropody appointments every six weeks up until the age of 11 to have his hard callouses removed using a scalpel or razor without any anaesthetic.

“By the time I was 11, I couldn’t bear my feet being touched because they were so sensitive, and the chiropodists were cutting into my skin," he recalls.

At just the age of 25, the yard manager at a fencing company was drinking heavily and even contemplated taking his own life.

“I’d down some barley wines and fall asleep for three to four hours before I would wake up with my feet throbbing,” he says.

“I got depressed sometimes, mainly because there didn't seem to be any way out of this problem.”

Over the years he was treated by dermatologists with different medications that at best provided temporary relief, so he learnt to trim his calluses himself using Cod Liver Oil to manage the inflammation and pain.

In 2013, the mother of his now-wife Susan, 65, showed him a YouTube video about a different but similar genetic condition and prompted Alan to get a genetic test.

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After sending off a saliva sample, he received his diagnosis of Olmsted Syndrome and just last year started taking Erlotinib, a drug previously used for pancreatic and lung cancer.

Within 24 hours of taking it, miraculously he had progressed from being forced to crawl through his house to being able to stand and walk.

“That wasn’t just a breakthrough, that was a nuclear bomb going off!" he says.

“It was absolutely wonderful, my hopes had been dashed time and time again but it was like, ‘Wow, we’re getting close here’.

“The morning after taking the pill for the first time I walked half a mile to our house, which I wouldn't have done otherwise except after extreme duress.

“For the first time since the age of eight or nine I could walk without major discomfort.”

Even though there is no cure to his syndrome, Bentley believes that his diagnosis through genomic testing has changed his life after over 40 years of uncertainty.

“It has absolutely dominated my life, spoilt my life, limited my life, but in some ways it has also made my life," he reflects.

“Being faced with a situation like this either makes or breaks people. I have come through it and have kept fighting – and it is now my crusade to stop others from suffering."

Professor Edel O’Toole, a professor of molecular dermatology at the Queen Mary University of London, says: "For anyone with a rare genetic skin disorder getting a genetic diagnosis is important.

"Although having a genetic diagnosis may not produce the opportunity for an instant cure for the individual, there are many researchers working on rare skin disorders and new treatments will become available.

"It is likely that many of these treatments will require a precise, genetic diagnosis.

"Although the disorder that Alan has is rare, knowing his genetic diagnosis allowed prescription of a drug which was truly transformative for the pain in his feet and some other symptoms.

"The new NHS Genomic Medicine Service and making genetic testing mainstream for the specialists who see the patients (dermatologists in my case) will allow more rare skin disorder patients to get a genetic diagnosis."

Additional reporting by SWNS.