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Patients praised the revolutionary work of the National Amyloidosis Centre (NAC) at the Royal Free Hospital ahead of World Amyloidosis Day last week.
The NAC hosted three patients who shared their stories of amyloidosis and their work for Amyloidosis UK, a patient-led charity aiming to support those who receive an amyloidosis diagnosis.
The rare condition is characterised by the body’s inability to break down the amyloid protein. This protein then accumulates around the organs and stops them functioning normally. Whilst amyloidosis cannot be cured, recent treatments can help slow the disease progression.
The specialist service at the NAC receives referrals from all over the world and is at the forefront of research into amyloidosis diagnosis and treatment. The centre has also become the second largest recruiter for research at the Royal Free London (RFL).
David Gregory, 64, is one of 6,000 patients seen by the NAC each year and is raising awareness of amyloidosis as secretary of Amyloidosis UK.
He said: “We’re a small charity and all of our trustees are patients. At Amyloidosis UK, we aim to help and support newly-diagnosed patients in talking about their disease and are working on building a network of support groups. I’ve been diagnosed for seven years now, after my sister received a diagnosis of hereditary amyloidosis.
“Back then, there was minimal treatment available. But fortunately, over the last three to four years, new treatments have come along and mine is slowing my amyloidosis down – it's fantastic. We’ve had great treatment here at the RFL.”
Vince Nicholas, treasurer of Amyloidosis UK, has been visiting the NAC for a hereditary amyloidosis, ATTR amyloidosis, for over fifteen years.
He said: “My mum was one of the first people to be seen in the NAC in 1991. I received my diagnosis in 2009 after first showing symptoms. I’ve since lost several of my cousins and my twin brother to the disease – I feel very lucky to still be here. Receiving a diagnosis can take you to a very dark place. It's difficult, but having new treatments has given us a lot of hope.”
Before new drug treatments were developed, the most common treatment for ATTR amyloidosis was liver transplantation.
Vince shared: “I had a liver transplant in 2010 and have since seen the changes that having drug treatments available has made to those with amyloidosis. I've been a patient advisor for all the currently approved drugs for amyloidosis treatment, which is amazing. The support from the NAC has been fantastic. Without that, I don’t know what we would do – we wouldn’t be here.”