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On 19 August 2017 we lost our husband and father Jim Plester to advanced AL (systemic) Amyloidosis which affected his kidneys, heart, spleen and liver. Jim has been feeling unwell for the past 4 years, however the numerous doctors and specialists he visited failed to diagnose his condition until early June 2017 by which stage the decease was already advanced. Despite access to one of the newest treatments available and the excellent care he received at UCLH, he quickly developed kidney failure, his condition deteriorated and by the time we learned to spell Amyloidosis and to pronounce the name of the drug he was treated with (daratumumab) he was gone.
Jim was an amazing man, who had everything to live for, always optimistic and looking on the bright side, loving and generous, forever putting others first.
Amyloidosis is a rare disease caused by abnormal deposition and accumulation of proteins in the tissues of the body. Amyloid deposits cause disease by gradually accumulating within organs, disrupting the structure and damaging their function. Often Amyloidosis affects a number of organs, the most commonly affected organs are the kidneys and the heart muscle. Currently there is no cure for this rare disease which is usually fatal. About 500-1000 new cases are diagnosed in the UK every year and around 1 person in every 100,000 in the UK develops systemic Amyloidosis. Only half of these are diagnosed. If not treated the disease leads to death within 5 years or earlier. Over the recent years important strides forward were made in treatments and survival outlook for patients with AL Amyloidosis has improved, however a lot depends on an early diagnosis and unfortunately up to 30% of patients still die within the first 3 month of commencing treatment. Raising awareness of the disease among GPs and specialists is crucial as symptoms of Amyloidosis are often similar to those of more common conditions. For example Jim was mainly investigated for heart-related conditions, had two rather unnecessary (in hindsight) surgeries and despite his symptoms persisting as well as the regular, almost monthly visits to the GP surgery his condition remained undiagnosed for a number of years.
We are fundraising to help with research for more effective treatments of the disease and ultimately a cure as well as to raise awareness of this condition. Hopefully this will prevent other families from losing their loved ones, often not because they fought and lost but because it was too late when they engaged in that fight in the first place. The devastation that causes is impossible to put into words.
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