Today is the first ever World Amyloidosis Day. In the first part of his exclusive interview with Hadleigh Nub News, Michael York OBE talks about his campaign for greater awareness of this rare disease.

Michael York is an actor and film star. He talks to Hadleigh Nub News about his long career in the second part of this interview, coming soon. But you will know him from such films as 'The Three Musketeers', 'Austin Powers', and 'Cabaret'.

Amyloidosis is a non-contagious disease caused by a build-up of an abnormal protein called amyloid in organs and tissues throughout the body. The build-up of these deposits can make it difficult for the organs and tissues to work properly. Without treatment, this can lead to organ failure.

Currently, there is no cure. The amyloid deposits cannot be directly removed. But there are treatments to stop more of the abnormal proteins being produced and treat symptoms. So, early diagnosis is key.

Michael has suffered from amyloidosis since 2009. In his book 'The Readiness Is All', he tells the story of his long journey from first symptoms, the search for treatments, both scientific and alternative, mis-diagnosis, and finally, treatment using stem cell therapy.

Since then, Michael has been campaigning for greater awareness of the disease and for more research. In 2016, Michael launched RENEWAL (Research Exploring New Amyloidosis Learning) a new initiative to call attention to amyloidosis.

About 500-600 cases of the commonest form of amyloidosis are diagnosed each year in the UK. From Suffolk, in the last 12 months, 27 patients were referred to the National Amyloidosis Centre at the Royal Free Hospital for a first assessment.

One of the problems with the disease is it is often mis-diagnosed, leading to patients getting the wrong treatment. Michael himself did not get a correct diagnosis until 2012.

Amyloidosis diagnosis in Hadleigh

Sometimes patients are diagnosed too late, when the damage to the body is too severe for successful treatment. That's why greater awareness of the disease is vital.

"It's great the word is getting out in Hadleigh", says Vince Nicholas, an amyloidosis sufferer and member of the national amyloidosis patient association. "Faster diagnoses and better quality treatment can only be achieved by more widespread knowledge of the disease."

As Michael York said, amyloidosis needs to be 'pulled out of the shadows and into the light'.

Michael is based in the US, and the interview was conducted by email. He was patient, charming, enthusiastic and inspiring. Here's what he had to say.

Q. How are you?

"I'm very well, especially considering I've had two Stem Cell Transplants, a Brain Shunt (which helped in restoring my balance and memory) and numerous other interventions designed to keep my ongoing Amyloidosis under control. That's why answering these questions is such a good exercise for me as it forces me to engage and give the gray matter a welcome work-out!"

Q. You decided to make your illness not only public, which is a brave thing for anyone to do, never mind a celebrity, but also to talk about your experience, the disease and its treatment, and campaign for more awareness and support for sufferers. Why did you do that and did you ever have second thoughts about doing so?

"Amyloidosis is a cunning illness as it frequently masquerades as other illnesses and is often misdiagnosed. That's why it is important to get the word out. I certainly never had any second thoughts about this. It seemed to me that it was a case where "celebrity" could have. some positive benefits."

Campaigning

Q. How is your campaign going?

"It appears to be going well, judging by the positive reaction I am getting from all over. The video I narrated about Amyloidosis Awareness has literally gone round the world."

Q. How much has the support of your wife Pat, and friends and family, meant to you in coping with amyloidosis?

"It has meant everything to me, especially that of Pat who has been tireless in her loving support and proactive efforts to facilitate my healing and recovery. Without her I don't think I would be here now writing this."

In 'The Readiness Is All', Michael tells how Pat's persistence was key to him finally getting a correct diagnosis and treatment.

Q. 'The Readiness Is All' doesn't appear to have been published in the UK yet. Are there any plans to do that? What about an audiobook version?

"'Readiness' is at present only available in the UK on line. I wish it could find a UK publisher as it's subject matter transcends national interests."

Read more about Michael York's RENEWAL campaign here.

Find out more about amyloidosis:

World Amyloidosis Day. The objective for the first ever World Amyloidosis Day, organised by Amyloidosis Alliance and patient organisations from 18 different countries, spanning 4 continents, is to alert the world to the diagnostic delay that patients face, which averages 4 years.

NHS info on Amyloidosis.

The National Amyloidosis Centre conducts world leading research in amyloidosis, runs patient forums and co-ordinates local patient groups.

In the second part of this exclusive interview next week, Michael York talks to Hadleigh Nub News about his career, and one of his films which has a special connection to Hadleigh.

To be continued…