“It’s like having the flu 24/7.”
That’s how Karen Forrester describes living with systemic lupus erythematosus.
The 60-year-old from Port Macquarie is one of approximately 20,000 Australians diagnosed with the autoimmune disease that affects the immune system’s ability to tell the difference between foreign invaders and a person’s own healthy tissues.
The result is an autoimmune attack causing severe fatigue, joint pain, skin rashes and damage to kidneys, lungs, the brain and blood vessels
Karen was diagnosed with lupus in 2002 after years of suffering with symptoms that were originally mistaken as rheumatoid arthritis.
Every day, she takes a myriad of medications to help manage the condition, including chemotherapy and immune-system suppressant Methotrexate.
The invisible illness has greatly affected her quality of life. She lost her hair, has battled with skin problems, faced issues with her organs and was forced into an early retirement.
“I look alright but if only people knew the pain I was in every day.”
But a medical breakthrough could soon be a game changer for patients like Karen.
Flinders University researchers now understand the structure of the “rogue clones” that cause lupus.
They’re hopeful this could lead to earlier identification of the disease as well as more effective treatments.
“The ultimate goal of our work is to measure response to treatment and to design therapies to remove rogue clones in individual lupus patients,” said the study’s co-author Dr Jing Jing Wang.
The new finding has allowed the team to advance from measuring just the level of autoantibody to breaking down their precise components.
Identifying and isolating the signature of the rogue clones can provide information about whether a drug therapy is working.
Karen is hopeful for a cure as current treatment options can have serious side effects. Previously, she was on prednisone, which decreased her bone mass and caused osteoarthritis.
“It would be fantastic if they developed a cure one day,” she said.