Michael York's battle with amyloidosis

Michael York, the British-born film and stage actor and star of Cabaret, was blessed with youthful skin. He never needed eye makeup for his roles. So when dark rings began to develop, he knew it was something more than lack of sleep.

"I wondered whether it was a virus or something innocuous," he said. "Then in 2009 I was doing a mini-series and noticed it was getting really bad. Because of my profession I could slap some makeup on, but if I had a shower, they would turn purplish, so I began to think something was amiss."

It was more than three years before York discovered he was suffering from the rare and potentially fatal condition amyloidosis. In spite of his connections and access to the best medical care, things became steadily worse as the hunt for answers took him down one wrong path after another.

Amyloidosis is caused by the abnormal production of insoluble proteins that clump together in different parts of the body, eventually causing vital organs to shut down. Because it is unusual (there are only 500-600 cases diagnosed in the UK each year) and the signs and symptoms are different in each person, it is very hard to recognise.

York, 71, spoke about the long and difficult road to diagnosis on a visit to London, where he performed in a charity reading at the Old Vic and visited the Royal Free Hospital, the leading centre in the world for the research and treatment of amyloidosis. It is the only hospital that offers a scan to locate and quantify all the amyloid deposits in the body. Professor Sir Mark Pepys, director of the Wolfson Drug Discovery Unit at the Centre for Amyloidosis and Acute Phase Proteins, who invented the scan, is now working with GlaxoSmithKline on a drug he hopes could clear the amyloid deposits from the body.

Late diagnosis is far from unusual and can have dire consequences. Although median survival for Pepys' patients is now eight to 10 years, 20% arrive with irreversible organ failure and do not live so long.

York had ignored the rings until he and his wife, photographer Pat York, went to Washington for Barack Obama's inauguration and stayed with a close friend, the biologist William Haseltine. "He said, 'What the hell is wrong with your eyes?' Go back to LA and have an eye examination. Because of the weight of his authority, I did," said York.

The ophthalmologist said he had Fabry's disease – a disturbing but incorrect diagnosis which proved to be, said York, "the first of many".

He tried to carry on as normal but increasingly felt tired and ill. The turning point came when he agreed to give a talk on a cruise organised by National Public Radio. "We picked up the boat in Dubai and I started to feel really bad. Everything was swelling up and it was very hot outside and very cold on the boat and I began to feel so wretched that I don't know how I did my lecture. Two weeks after that Pat found me comatose on the floor. I'd passed out and was rushed to hospital and they couldn't determine what it was."

He went to the Cedars-Sinai hospital in LA, where doctors decided he had multiple myeloma, a type of bone marrow cancer, also with a poor prognosis – only 37% of patients survive five years after diagnosis. The treatment did not help.

York credits his wife with the eventual breakthrough. She got in touch with Dr Robert Kyle at the Mayo Clinic in Rochester, Minnesota, the multiple myeloma pioneer who is also an expert in amyloidosis, to which it is related. A long email correspondence began.

Kyle, 84, no longer sees patients, but introduced the couple to doctors at the Mayo, where tests confirmed amyloidosis. In July last year, York underwent an autologous stem cell transplant – a procedure involving the removal of some of the patient's own immature blood stem cells from the body, followed by high-dose chemotherapy to get rid of diseased or damaged marrow. The treated stem cells are then reinjected into the body. It is a risky procedure but the actor sailed through.

The rings under the eyes are still there, but York says he no longer feels ill and tired. The scan at the Royal Free last month showed most of the deposits had gone, although some remain in the spleen, and his voice and heart muscle have been affected. "I've been reprieved," he said. "I don't know about cured because it can come back. It's like night and day to get your enthusiasm back, to be able to travel. I'm not looking normal – I could put makeup on but I don't see the point. This is me now and when people ask about it, I'm able to tell them."

Not everyone has the manners to ask. The Globe, a US tabloid, ran a picture of York last year with claims from two cosmetic surgeons that he'd had surgery. York wrote to the journalist offering her the true story and she replied in a one-line email: "Happy you're feeling well."

The couple hope the rings below his eyes will eventually disappear. In the meantime, he jokes, he is available for parts for men in dark glasses of a certain age – lots of mafia bosses.