An 80-year-old Hunter woman who has battled illness and pain for most of her life says she’ll never give in.
When Juliet Roosendaal was only four years old, she suffered a bout of juvenile idiopathic arthritis.
“I spent two years in hospital as a little girl,” Mrs Roosendaal, of Corlette in Port Stephens, said.
“Every year thereafter, until I was 16, I was in hospital.”
She was eventually diagnosed with lupus, an autoimmune condition which hit the headlines this year when 25-year-old actress and singer Selena Gomez revealed she suffered from it.
Gomez, 25, required a kidney transplant.
Mrs Roosendaal is telling her story to raise awareness about the disease and autoimmune illness.
Her symptoms include chronic pain in her joints and muscles and general stiffness.
“My pain is always worse in the morning. It’s very difficult to get out of bed and get dressed,” she said.
She said the condition “constantly interrupts my life, my plans and my goals”.
“I have to pick myself up again, refocus myself, set new goals and start again,” she said.
“I have to because I have no alternative. I can’t hide away in a corner.”
Her dad warned her as a little girl that the disease would be a big challenge.
“I see it as a challenge that I’m going to win,” she said.
“I’m at war with it at times. I think, ‘you’re not going to beat me’. But it gets tough.”
A new study released in December found that advances in treatment options have led to an increase in survival among lupus patients.
However, delaying a diagnosis was a big risk factor for poor outcomes.
A first-of-its-kind clinical trial will occur in the US over five years to evaluate the use of stem cell treatment for lupus.
Dr Marline Squance is executive officer of the Autoimmune Resource and Research Centre at John Hunter Hospital. The centre supports more than 1000 people.
“Autoimmune illness affects one in 20 Australians and encompasses over 80 different diseases,” Dr Squance said.
“Some diseases are rare while others are more prevalent.”
She estimated about 1200 people in the Hunter suffer from lupus.
“Lupus is a complex disease, the cause of which is unknown,” she said.
“It is likely that cause results from a combination of genetic, environmental and possibly hormonal factors that work together to cause the disease.”
She said lupus research was “difficult due to the variation in symptoms and long-term impacts”.
“Our centre would love to do more trials and research, however we need funds.”
Scientists were making progress in understanding the processes leading to lupus, she said.
“Research suggests that genetics plays an important role.”
However, no specific lupus gene has been identified. Instead, it appears that several genes may increase a person's susceptibility to the disease.