S2, E12. Alkaptonuria: The value of working closely to empower patients
Alkaptonuria or AKU is an ultra rare genetic disease that can cause significant damage to the bones, cartilage and tissues of those affected. At the National Alkaptonuria Centre (NAC) in Liverpool, patients are able to access Nitisinone to treat their AKU but whilst doing so they are advised to follow a protein controlled diet.
Clare Soulsby and Helen Bygott work closely at the NAC in Liverpool as the senior dietician and nurse specialist.
They talk about the importance of coordinated care in AKU, the value of working closely as clinicians and with patients and the challenges involved with empowering patients to independently control their diet. As well as the impact of being involved in the clinical trials for AKU both for healthcare professionals and those living with the disease.
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Rarely Heard Season two is supported by Cambridge Healthcare Research and Alexion.
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