Gerry gets his life back

Sunday Mail - - NEWS - MARTINA SIMOS

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:

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