Ministry of Sound’s DJ Mark Wilkinson lived for years without a diagnosis with a little-known debilitating inflammatory disease
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As a resident DJ at the Ministry of Sound nightclub in London in the late 1990s, Mark Wilkinson mixed chart top dance hits with his life like it was one long party.
He traveled the globe, played in overcrowded nightclubs in 65 different countries, produced records and started his own label.
But in the early 2000s, what Mark calls his “dream life” turned to hell when he was stripped of his mobility and livelihood.
“I’d spent 15 years in the music industry, having fun, traveling the world and thinking everything was great,” says Mark, now 50.
“Then suddenly everything collapsed. I was in agony and couldn’t move and no doctor could tell me what was going on. I was suicidal. “
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After 18 months of severe pain, Mark was finally diagnosed with axial spondyloarthritis or axial SpA – an inflammatory disease of the spine and joints. The condition is genetic and usually begins gradually in early adulthood, when muscles attach to bones and cause extreme pain. If left untreated, it can permanently fuse the bones together.
“People often think it’s a teenage sports injury or growing pains and dismiss it as nothing serious,” says Liz Marshall of the National Axial Spondyloarthritis Society.
“But we recommend anyone under 40 who has had back pain that has persisted for more than three months and is slowly increasing to see their doctor.”
Axial SpA affects one in 200 people in the UK. Although there are more people than multiple sclerosis and Parkinson’s disease combined, nine out of 10 people in the UK have never heard of it and the British wait an average of eight and a half years to be diagnosed.
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“I had never heard of it, and neither had any of my family or friends,” says Mark, who lives in Esher, Surrey with his wife Emma.
Mark was only 26 years old when the disease first started causing problems. “I had a lot of stomach ache and the doctor told me I had irritable bowel syndrome, but I had a lot of pain all over my body – not just my stomach.”
At first, Mark assumed that his hedonistic lifestyle had become too much for his body.
“I was young and a resident DJ at Ministry of Sound. I was so excited about DJing and the lifestyle that came with it. I did not establish the connection between the pain and a serious illness.
“I was just trying to grin and take it, but I found myself hunched over for hours. When I was working as a record producer, I was in so much pain that I was lying on my sofa in the studio while my sound engineer was working on the computer and I was trying to listen. “
At first, Mark believed that over a decade of partying had finally caught up with him. But over time, he realized it was something more serious. When he was 33 years old, Mark reached a point of crisis.
“One evening I was in my apartment carrying my dinner on a tray and all of a sudden I collapsed and dropped everything.
“My brother was there and laughed at first when he thought I had stumbled. But I couldn’t get up and that was a real shock.
“My body was freezing and I couldn’t move without being in severe pain. My hands and wrists felt as if they were burning and began to swell. “
At that point, Mark began an 18-month battle over a proper diagnosis.
“Nobody could tell me what was going on. It was soul-destroying, “he says.
Meanwhile, the disease strengthened his life. “I couldn’t sleep at night and when I stopped I would wake up in agony with a cry of pain. It was terrible. In fact, it is difficult to think back on now.
“There were moments when I thought, ‘If this is really the case for the rest of my life, is it worth living?’ I felt completely alone. My friends still lived a party lifestyle, but I was in bed and couldn’t move. “
Mark also took large doses of ibuprofen. “I took more than I should, but it was the only thing that helped. In the meantime the pain in my stomach got worse from the painkillers. “
Mark began to reject his job and ran into financial difficulties. Then, 18 months after his sudden breakdown, he moved from his apartment in central London to another part of the capital, changing family doctors in the process.
“I shuffled in and looked very thin with swollen joints. The doctor gave me a look and said: “You need an emergency appointment with the rheumatologist”. Up to this point nobody had mentioned my joints. “
Six weeks later, Mark went to University College London Hospital and eventually learned that he had axial SpA.
“The counselor gave me a brochure about the disease and I could have written it because everything that was going on in my body was on these pages.”
Mark was prescribed anti-inflammatory drugs to control the condition. “The counselor told me I would have to take medication for the rest of my life, but I would be fine and that gave me hope.”
After a flare-up when he was in his early 40s, Mark underwent surgery to remove fluid and inflamed tissue from both knees, and his condition is now manageable without medication, just exercise, stress management, and a strict vegan diet.
He will never forget to finally get a diagnosis.
“I felt like I wasn’t alone anymore. That was a nice moment, ”he says.
- The Axial SpA Campaign Act calls for a gold standard time for diagnosing axial spondyloarthritis and aims to reduce the average time from eight and a half years to just one year. Visit nass.co.uk for more information
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