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Tag: rare disease

Faces of Amyloidosis

Faces of Amyloidosis

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Thank you so much to Mackenzie’s Mission for putting together this Faces of Amyloidosis video and for including me in it. Spreading awareness of this rare disease is crucial. It leads to earlier diagnosis which leads to saving lives. Once thought to be the disease of elderly men, a diagnosis of Amyloidosis is becoming more prevalent in younger men and women. Doctors need to recognize this and test if symptoms are present even if the patient does not fit the…

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Living with AL Amyloidosis

Living with AL Amyloidosis

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I have AL amyloidosis with multiple organ involvement. Plasma cells in my bone marrow over produce light chain proteins which misfold to form amyloid light chains. These misfolded proteins have built up in my heart, liver, and kidneys, causing them to slowly fail. AL Amyloidosis is a rare and life threatening blood disorder for which there is no cure.