CORINNE Perrett’s liver is about to set off on a world journey.
Actually, the Lesmurdie resident has six livers that will roam the globe.
Dubbed Super Liver, the caped, plush toys are going to be sent to patients of a rare liver disease – primary sclerosing cholangitis (PSC).
Ms Perrett was diagnosed with PSC in 2006 and has since attended two conferences in the US to learn more and find others with the condition.
She has now partnered with the conference organisers, PSC Partners Seeking a Cure, to send the six toy livers across Australia and over to the UK, Sweden, Israel, Canada and the US.
The first liver will be sent this month to a girl in Melbourne. Ms Perrett said anyone else with PSC who wanted to take part could do so.
“The plan is for everyone who receives him to take a photo of them with him and something meaningful to them – like a sports player or their family – and the photos will be made into a calendar,” Ms Perrett said.
The calendar will then be sold to raise money for PSC Partners Seeking a Cure’s efforts to support those living with PSC, and research to find a cure and encourage organ donation. “There is no known cure other than a transplant,” Ms Perrett said.
PSC is a rare, auto-immune disease affecting the bile duct and liver.
It affects roughly one in 5000 men and one in 16,700 women.
“It kind of feels like a death sentence because you’re told you have five to 10 years,” Ms Perrett said.
Ms Perrett also said it was not known “how or why” those with PSC contracted it, and diagnosis was a lengthy ritual of tests and scans.
She said coming to terms with the diagnosis was not the only hurdle.
“I don’t look sick, which can be a problem,” she said.
Ms Perrett said living with PSC could be draining, with symptoms including extreme fatigue and failing memory.
Other symptoms include abdominal pain, jaundice and intense itching.
“I’m very cautious now in planning things because I don’t know when I’m going to have an attack,” she said.
Ms Perrett said since finding out about Partners Seeking a Cure, coping had been easier.
Anyone who wishes to help or take part in Ms Perrett’s Super Liver campaign can contact her on pscsuperliver @yahoo.com.au.