In November 2015, Brisbane local Carlie Wells, 46, woke up one morning and couldn't lift her head off the pillow.

"It started like that," she says, "I went to work, just took a couple of Nurofen - which are like Panadol - and just thought I needed to see a chiropractor." Carlie passed it off as normal aches and pains from working as a nurse.

But the aches continued.

Carlie woke up once again unable to move. This time it was her legs. She was taken to the hospital where her condition puzzled the doctors.

Advertisement

"I lost 17 kilos. For some, that might be good but when you're only little like me - I'm only five foot and I weighed 55 kilos, so I lost all my weight," she says.

A month went by before she got the diagnosis.

Carlie had systemic lupus erythematosus (SLE).

SLE is a form of lupus disease that creates inflammation and tissue damage in the body. For Carlie, this means swollen joints, severe skin rashes on her chest and arms, and a loss of appetite.

In SLE, patients experience both flare-ups and periods of remission - when the symptoms are less intense or non-existent.

"Some days I can't walk properly, other days I can skip - that's a bit over the top, but other days I can walk fast," Carlie explains.

"Every day is a different day when you wake up with lupus," she adds. Lupus is an autoimmune disease.

Autoimmunity is an umbrella term for over 100 chronic conditions that anyone can get, despite age or gender, but it affects more women than men.

Autoimmune diseases occur when the immune system starts attacking the body's own cells, explains researcher Dr Abul Abbas.

"[The immune system] reacts when it needs to, it doesn't react when it doesn't need to and something goes wrong with that balance. It now starts reacting against yourself," he says.

"So far the treatments have not been designed to reset that balance, they've been designed to stop the damage," Dr. Abbas says. Researchers don't know what triggers the deviance in the immune system and there is no cure.

Carlie Wells.
Carlie Wells.

Once you have gotten one autoimmune disease, you are more likely to get a second, or even a third.

Four months after her SLE diagnosis, Carlie was on the correct medication but kept losing weight. Her doctors were puzzled once more and performed a biopsy on her stomach. That's when she was diagnosed with coeliac disease, her second autoimmune condition.

"A big, dramatic, almost 12 months for me," she says when looking back on this past year.

1.15 million people in Australia suffer from autoimmune diseases. It is more prevalent than cancer or heart disease. Yet, autoimmunity as a disease group is not included in the National Health Priority Areas (NHPA) or the National Chronic Disease Strategy (NCDS).

According to Autoimmune Resource and Research Centre Executive Officer Dr. Marline Squance, autoimmune patients are denied access to chronic disease programs because their disease is not listed in the NHPA or the NCDS.

"You go and talk to government officers, you go and talk to parliamentarians, and they say 'oh we have this great chronic disease management program', but it doesn't work," she says.

"It works for those people that have those specific priority health areas, but not for other people."

Carlie had to quit her job as a nurse due to her illnesses. Her doctors say that she can never work again. After applying for the disability support pension four times, Carlie was finally approved.

Carlie Wells.
Carlie Wells.

Beside the emotional cost of not being sick enough for certain programs, autoimmune patients who're not managed well can develop more life-threatening conditions, according to Dr. Squance.

"A person doesn't die of lupus, they die of cardiac failure. They die of renal failure," she says.

A patient's family and social life is also disrupted.

"I can't keep promising to go out to lunch because you don't know what you're going to feel the next day," Carlie says. It has impacted her relationships with her friends, but Carlie's diseases also carry a genetic factor.

"My children haven't accepted it, they don't really want to even talk about it," says Carlie in terms of her SLE diagnosis. Carlie had her daughter tested for SLE, but not her 27-year-old son.

"I got a horrible feeling that he may have it. I'm hoping not," she says.

More and more people are getting autoimmune diseases, and rapidly so. Autoimmunity researcher Dr. Emma Hamilton-Williams gives the example of diabetes type one incidents that have been doubling every decade for the past 50 years.

"They are increasing because of something that's changing in our lifestyle so it's not, for example, a genetic change," Dr. Hamilton-Williams explains.

Carlie doesn't know where her autoimmune diseases will take her in the future, but she remains optimistic.

"I believe there is hope out there," she says.