Actor Michael York raises profile of the rare disease amyloidosis at National Press Club Luncheon

British actor Michael York, speaking at a National Press Club luncheon Friday, described his struggles with the disease amyloidosis in an effort to raise awareness of the rare condition, which affects about 1 in 100,000 people.

The actor, who starred in "The Three Musketeers" and various Austin Powers films, realized something was wrong when he began to develop dark spots under his eyes, which required he use additional stage makeup to cover up. He also began to feel very tired, and was unable to pursue his acting career, until his recent remission when he voiced veterinarian Dr. Budgie in "The Simpsons."

As is often the case with rare diseases, York’s condition was misdiagnosed for several years, before a doctor at the Mayo Clinic who specializes in amyloidosis realized that he had the disease, not the cancer that doctors diagnosed initially. His disease has been in remission for the last three years.

“Thousands die never knowing they had the disease,” York said. He called for increased education about the condition among the medical community. The symptoms of amyloidosis include unexplained weight loss, fatigue, foaming urine, swelling of the ankles and leg and numbness and tingling in the hands and feet.

In addition, York said additional research funding into the disease is needed from federal agencies like the U.S. National Institutes of Health. “They seem to think that funding belongs elsewhere. I’m partial, but they’re wrong,” he said.

The good news is that medicines for the disease are in drug companies’ research and development pipeline.

“Things are happening. Our little orphan (disease) is being ushered out of the shadows into the spotlight. It’s our moment,” he said. “Before we had to use the castoffs for multiple myeloma. Now places like Prothena Labs in San Francisco, they’re going all out to provide us direct remedies.”

Another company developing a treatment for the disease is Alnylam Pharmaceuticals, based in Cambridge, Mass.

Experimental treatments provide amyloidosis patients with opportunities to participate in clinical trials, and benefit from the medications before they are commercialized. York said he did not participate in any such trials because his low disease load made him ineligible.

York said that patients diagnosed with amyloidosis are lucky, because the medical community “found them in time,” demonstrating the importance of identification of the disease as the first step toward treating it. He also advised other sufferers to never stop being positive.

On a humorous note, the National Press Club honored York by serving cookies containing a portrait of the actor. The original portrait was made by the playwright Tennessee Williams, giving York a "claim to fame."

York thanked Chef Susan Delbert who recreated the portrait and said he would frame the cookie.