alexa alkaptonuria society

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alkaptonuria society

The Alkaptonuria (AKU) Society is a world-renowned centre for the study and research findings of alkaptonuria leading the new national research centre provides yearly health checks treatment, support and advice to people with the disease. It generally describes a rare genetic disease, which causes severe, early-onset osteoarthritis. It also develops a patient organisation, founded in 2003, that organized to help and support the patients effecting with the disorder and fund research to understand and treat AKU Patients accumulate a black pigment (Urea content) that weakens bone and joints, increases heart diseases like cardiac disturbances, and also causes prostate and kidney stones as well as discolours skin – leaving dark black spots in the eyes and ears. As part of the association, patients treating with the alkaline urea also receive Patients Know Best which enables alkaptonuria society members help the patients to manage their healthcare needs more effectively and provides the specialist clinicians treating them a single view of a patient’s entire medical history. At the moment, communication can be very slow and convoluted involving written letters in description manner back and forth between the different teams involved – slowing down my treatment. Sometimes hard copy notes can be delayed or mislaid and leading to and that means that taking other clinicians has diagnosed – because this society leads to one who has been to all the appointments. At the moment, communication can be very slow and convoluted. 

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