Gerry gets his life back
GERRY Roussianos thought he was just tired from a busy lifestyle, working hard and playing soccer.
Then just a few days after his 40th birthday, the bad news came – a diagnosis of an extremely rare, life threatening disease called atypical Haemolytic Uraemic Syndrome (aHUS), which damages organs including the kidneys and pancreas.
“It was kind of weird,” he says. “The doctors had to tell me I was sick. Other than the pain that I had, which had nothing to do with aHUS, I was feeling fine doing the usual activities. I thought it was normal life tiredness.”
In January last year, the Kidman Park man was experiencing chest pains, which became severe. He was admitted to a private hospital and told the pain was caused by pancreatitis, before blood tests confirmed he had aHUS.
Mr Roussianos, now 41, the father of two boys – Nik, 12, and Kristos, 10 – says a type of intravenous infusion treatment once a fortnight at the Royal Adelaide Hospital has helped. “I still suffer but I feel better the last six months,” he says. “I can go to work and put in a good day’s work. On the weekend, I mowed the lawn and helped around the house.”
The treatment for the rare disease, which is thought to affect just 159 Australians of various ages, is federally funded through the Pharmaceutical Benefits Scheme at a cost of $600,000 a patient a year. Patients’ eligibility is reviewed every 12 months .
Mr Roussianos’s wife Theonie, 39, says it is stressful knowing an annual application has to be made by his doctor so her husband’s treatment can continue. “I would love the Government to change the review process,” she says. “We just want continued access to treatment to be an informed individual scientific decision between doctor and patient, not a decision based on cost.” Mrs Roussianos and a small committee are organising a ball at The Grand Ballroom, Fulham Gardens, on October 21 to raise awareness of aHUS and funds for kidney, transplant and diabetes research.
FEELING BETTER: Gerry Roussianos with wife Theonie and their sons Nik, 12, and Kristos, 10. Picture: