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On the 9th May 2017 we lost our beautiful daddy, husband, brother and friend Bing Sambrook to AL cardiac amyloidosis.
He was a 6 ft 4 former rugby playing gentle giant; a PE teacher who kept himself fit and healthy. He was widely renowned for his kindness, sharp wit, wisdom and gentlemanly ways. We never saw such a disease coming for such a man at the age of only 58. Having worked hard all his life, Bing was just about to retire with his wife of 33 years, just about to give his daughter away at her wedding, and was likely only a few years shy of being a proud grandpa for the first time. He leaves twin daughters aged 27, a son aged 21 and a devoted wife who he has known since they were at university together. He had everything to live for still, and he desperately did not want to leave his beloved family.
Bing passed away from heart failure around 2 and a half months after being diagnosed, despite much treatment. Diagnosis of AL amyloidosis can be challenging, since the symptoms are often very general. Bing had been feeling unwell for around a year or so. He went back to the GP many times but the nature of the disease meant that it took a long time to get an accurate diagnosis and one doctor even suggested that his symptoms were psychosomatic. Without treatment to address the underlying cause, the amyloid deposits can eventually lead to organ failure too severe to reverse once set in motion. In Bing's case, the amyloid seems to have been deposited mostly in his heart and kidneys. Even though he responded well to chemotherapy treatment for the coincidental cancer (myeloma) this seems to have had little or no impact on the amyloid. As it is a fairly rare disease, there is currently very little awareness of amyloidosis, even among healthcare professionals. There are currently no treatments available that can directly remove the amyloid deposits associated with AL amyloidosis. Treatment aims to prevent the further production of abnormal light chains while monitoring and treating any problems affecting your organs. This can give your body enough time to gradually clear the deposits before they build up again and can help prevent organ damage. In Bing's case, the disease wasn't caught in time.
Overall, about 600 new cases of amyloidosis are diagnosed in the UK every year. It is unclear, however, how many further heart failure cases may go on undetected with amyloidosis as the cause. We therefore aim to raise awareness of this disease as well as further fund research into finding more treatments and, ultimately, a cure one day.
We're setting up this page on what should have been Bing's 59th birthday, the 4th June 2017 in order to continue his memory, celebrate his life and to help prevent other families from losing such very special dear people.
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