S2, E11. Alkaptonuria: One man’s rare disease journey from Ukraine to the UK

Kostiantyn was forced to leave his home in Kyiv, Ukraine when bombing started on February 24th 2022. Unable to join the Ukrainian military due to the rare disease Alkaptonuria (AKU), Kostiantyn and his wife fled Ukraine, travelling across Europe and reaching the UK; where Kostiantyn was able to access Nitisinone to manage the disease at the National AKU Centre in Liverpool.

Kostiantyn speaks about his experience with AKU from diagnosis in Ukraine to accessing treatment in the UK. How he manages his love of sport and determination to reach his goals with the pain caused by AKU and reflects on grappling with the new imposed identity of ‘refugee.’