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August 18th, 2016

Michael York, Star of Stage and Screen, Calls Being Patient Advocate ‘the Best Role’

By In the Loop
Actor Michael York at Mayo Clinic's 150th celebration.

Actor Michael York at Mayo Clinic's 150th celebration.

Michael York made his film debut opposite Richard Burton and Elizabeth Taylor, co-starred with Liza Minelli in Cabaret, and reached a new generation of fans as Basil Exposition in the Austin Powers movies. But the actor says his favorite role is one that stands no chance of winning him an acting award. York is using his distinctive and powerful voice to raise awareness for amyloidosis, a rare disease he was diagnosed with in 2012. “For me, this is the best role I’ve ever been given in my life, because it’s important,” he told a gathering at the National Press Club. He’s that eager “to get word out” about the condition.

York, like many of us, had never heard of amyloidosis before his diagnosis. As he told the National Press Club (and those tuning in on C-SPAN), amyloidosis is an “orphan” disease. “It’s the Rodney Dangerfield of diseases,” he said to laughter from those assembled. “It got absolutely no respect.” But that’s changing, thanks in part to his efforts. 

York’s audition for this role began in 2008, when he noticed dark circles forming around his eyes. He says he’d been “blessed with youthful skin“ (just like Cory) and until then, “never needed eye makeup for his roles.” The change rattled York, and he began an odyssey toward a diagnosis.

Initially, York was told he had Fabry disease, a genetic disorder. But his symptoms worsened. He became swollen and fatigued, and one day, his wife, Pat, discovered him passed out on the floor. He was rushed to the hospital, but doctors were unable to determine what was causing his symptoms. More testing led to a diagnosis of multiple myeloma, and York began receiving chemotherapy. But he continued to feel unwell, and Pat continued to push for answers. Her quest led them to Mayo Clinic’s Rochester campus and Robert Kyle, M.D., an expert in both multiple myeloma and amyloidosis. Dr. Kyle, “a man who should be crowned with laurels,” according to York, correctly diagnosed the actor’s condition. He underwent a stem cell transplant at Mayo, and the condition went into remission.

Though York lives in Los Angeles, he says he continues to “schlep” to Mayo Clinic for care because Mayo “is the most extraordinary place, the mothership of hospitals for me.” He “loves” his doctors, many of whom he’s become friends with. And all of whom he “admires inordinately for what they do.” He even helped Mayo Clinic celebrate its 150th anniversary by participating in the institution’s Sesquicentennial event in 2014.

York’s experience propelled him into his new role as an amyloidosis advocate. He’s narrated an educational video about the condition, launched a research effort, and written a book that is awaiting publication. And though he continues to do some acting — including a guest spot on The Simpsons that’s earned him the admiration of his grandchildren — he now devotes the bulk of his time to raising awareness and funds for amyloidosis research and treatment. “If I can give whatever energies and time I have left to this,” he told the National Press Club, “I shall be a happy man.” To that we say, bravo.

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Tags: Amyloidosis, Community, Michael York, Patient Stories, Stem Cell Transplant

Comment


Pat Pinchin
@patpinchin

Posts: 1
Joined: Aug 19, 2016
Posted by @patpinchin, Aug 19, 2016

Please, please, please Michael, come to the UK and do the same for sufferers here. We need help with awareness too.


Kathy L
@kalawil

Posts: 1
Joined: Jun 02, 2015
Posted by @kalawil, Aug 19, 2016

So grateful for your efforts, Michael, in raising awareness about amyloidosis and in giving Mayo the credit it deserves. The doctors, nurses, staff, and indeed the entire organization are extraordinary, way beyond excellent. Thank you!


Marie
@resilient

Posts: 1
Joined: Aug 20, 2016
Posted by @resilient, Aug 20, 2016

Thank you for all you are doing. I am a Mayo patient as well and totally agree that it “is the most extraordinary place, the mothership of hospitals.” The expert physicians and the caring staff saved my life. I will be visiting the Mayo next month. I am so grateful for the Mayo.


Susannah Clarke
@clarke62

Posts: 1
Joined: Aug 21, 2016
Posted by @clarke62, Aug 21, 2016

So wonderful that a man such as Michael is supporting the organisation. Ive been a patient since 2005 at the Royal Free hospital in London since my diagnosis of Amyloidosis A/L. Its a horrendous disease and one which id never heard of. However its debilitating affects didnt dampen my resolve to beat the disease and survive. Although i lost my kidneys after a successful kidney transplant in 2013 at the age of 59 and the amyloid under control im hear to tell the tale that its not all gloom and doom. All thanks to excellent support from my local hospital and in London.

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