LUPUS has been Mary Erceg’s daily companion for more than four decades.
The Inglewood resident said she was fortunate to be diagnosed with the autoimmune disease in 1973 at the age of 16 because without early diagnosis and treatment, lupus could be fatal.
“Initially, I had mysterious bruises and swollen and painful joints on every body part imaginable which was initially put down to sport injuries and later juvenile arthritis,” she said.
“But I kept getting sicker and sicker with my expanding list of symptoms from chronic tiredness to nausea, sensitivity to the cold and myriad infections proving to be a real mystery for doctors.
“In the 70s most doctors had barely heard of systemic lupus erythematosus, let alone knew how to diagnose it.”
Ms Erceg said she was fortunate her GP had visited the UK where he had seen lupus patients and was familiar with the tell-tale butterfly rash sufferers experience.
“He immediately ran a series of blood tests and positive indicators came back straight away,” she said.
“Finally getting a correct diagnosis was a relief, but it was also very frightening.”
Ms Erceg said back in the 70s and even in 90s the treatment of lupus was an unexplored frontier.
“What little information there was, was particularly negative in terms of quality of life and life expectancy,” she said.
“My parents were told that at best my life expectancy would be in the vicinity of five to 10 years.
“I was gutted. I was just a teenager and meant to be enjoying life, not dealing with a chronic, life threatening disease.”
Ms Erceg said her happy, resilient nature proved vital in coping with the disease.
“I remember thinking no doctors are going to give me a death sentence. I am going to prove them wrong,” she said.
“In the first couple of decades my symptoms were unpredictable and expanding in complexity and duration.
“Simple tasks like getting out of bed, brushing your teeth and sometimes even breathing were difficult.
“There were many days when I wondered how I was going to get through the minute let alone still be here decades later.”
Instinctively she knew she could not go on living like this.
“In 1984 I stumbled upon Louise Hay and her book, “You can heal your life.” which got me thinking about lupus not just as a physical disease, but as a total integrated package of mind, body, spirit and soul,” she said.
“I threw myself into researching everything and anything I could get my hands on about the disease.
“I even travelled to Mexico in the late 80s to take part in new treatment regimes.”
At the age of 27, her journey to wellness began in earnest.
“Life was finally starting to look up,” she said.
“However just when things were consistently going well I had a major setback after I picked up an infection following an overseas trip which played havoc with my lupus symptoms.”
Ms Erceg said even in 1993, many hospital doctors were not familiar with the disease which led to life-threatening consequences.
“Tragically for me, some fundamental treatment errors were made at the hospital and I found myself in ICU in a coma for more than a week fighting for my life,” she said.
“I spent more than four months in hospital learning to talk, learning to feed myself and learning to walk again.”
Ms Erceg now sits on the board of Lupus WA and is committed to sharing lessons learned from her lived experience with the disease which affects around 40,000 Australians.
“Gratefully, today I am happy and healthy and live a full and active life,” she said.
“Now my daily challenge is to continue to live well with lupus and along the way to support others to make their own lupus journeys a little easier.”
To help raise awareness and understanding, Lupus WA is hosting an International World Lupus Day Lunch on May 10 at the Oakover Grounds in Middle Swan. For more details go to www.lupuswa.com.au