Prominent Central Coast musician Aaron “Northie” North told his fans for the first time last week about his PNH diagnosis via this YouTube video.
Aaron was 18 when diagnosed with PNH two years ago and has continued to manage his demanding career with the dramatic impact of PNH upon his lifestyle. Aaron has the benefit of Soliris treatment through Alexion’s limited compassionate use programme, which will end in May 2011.
If treatment is not funded by the Australian Government by then, Aaron will return to the struggle of daily life of untreated PNH, which the majority of patients are currently living. Aaron has told his story to support the efforts of all patients to gain access to Soliris.
Read more about Aaron’s story here.