JENNY Wallace will take part in an awareness walk on Australia Day, but only if the weather is not too hot, because she’s overly sensitive to humidity and UV rays.
It can’t be too cold, either, because her immune system doesn’t work properly.
She’ll complete the Walk for Lupus Awareness in a wheelchair because, as a sufferer of the painful auto-immune disease, the tissue in her skin and joints is inflamed and she’s lost mobility.
The event is in support of the five million people worldwide who have the incurable, potentially life-threatening illness. Most are women.
Awareness was scarce when Ms Wallace (pictured), now 50, first showed symptoms as a young girl.
It started with skeletal pain in her feet. Six weeks later, the problem had moved to her knees. She had difficulty moving and she was losing weight quickly.
“I’d been to one doctor who said I’d sprained my foot, then my mother took me to another, who saw juvenile arthritis,” she says. “He did blood tests and a series of X-rays and put me on doses of aspirin.” In October 1976, Ms Wallace’s joints became swollen.
“With lupus, all the joints are involved, all the organs of the body, the whole kit and caboodle.”
Back then, she says, lupus was the worst diagnosis you could get.
“They didn’t know what lifespan I could have. Mum was told it was almost a death sentence. They knew very little then and it was just a wait-and-see game.”
There was no rheumatology unit at the Royal Children’s Hospital, so she spent many of her teen years stuck in wards with the elderly at the Royal Melbourne.
Ms Wallace was on so many painkillers that in the early ’80s, she nearly died due to a stomach ulcer. Three-quarters of her blood had to be replaced.
Today, the only shoes Wallace can wear are moccasins. She says it’s the things lupus has taken away from her that she most resents.
“The ability to wear a proper pair of shoes, the ability to dance – I was a ballroom dancer and so was my stepfather. But it isn’t a definite death sentence.” With the support of a loving husband, the vibrant mother of two says 36 years of lupus has taught her a lot, and she feels stronger than ever. “You need to know your boundaries, but within them you can live your life to the fullest.”
To contact the Lupus Foundation, phone 8555 9295 or go to lupus-sle.org.
