Katie Bukovac is used to the stares.
She was at the bank recently without make-up on when a woman in the queue behind her silently walked her two children to the back of the line.
She had just seen Katie’s face.
“It’s not contagious, but people don’t know that,” Katie said about lupus, the autoimmune disease that has ruled her life since she was diagnosed a day out from her 21st birthday.
“But it’s not the looks that make it hard – it’s not knowing from one day to the next whether you’re going to be sick or not, it’s not being able to bathe my infant daughter, or change her nappy, or wash my hair in the shower,” the 29-year-old said.
The rashes on Katie’s face and hands are red raw. She has to wear gloves in the shower to protect the delicate skin on her fingers and can’t tie up daughter Lexi’s hair for dancing class in case it catches on her flaking skin.
Since her diagnosis, Katie’s battle with lupus has grown increasing difficult.
While many people with the condition never experience characteristic symptoms that include rashes, joint pain, arthritis, significant hair loss, aching muscles, inflammation of the heart and lungs, fatigue and weakness, Katie has been thrown the full gamut.
A range of treatments, including intravenous chemotherapy, hasn’t helped – until now.
The Derrimut mother has been accepted to join a clinical research study run by pharmaceutical company AstraZeneca called the Tulip Program.
The 12-month study is testing whether a new drug, called anifrolumab, helps reduce symptoms of lupus and limits the need for other medications. So far it appears to be working.
“I haven’t been this good since before I had Lexi, about four years ago,” Katie said.
If the drug continues to work its magic, Katie hopes AstraZeneca will allow her to stay on the drug until it gets regulatory approval for use in Australia.
A relative of Katie’s husband, Jason, has started a fundraising campaign to help pay for her medication and possibly help subsidise a family holiday.
Katie hopes the campaign will also help raise awareness about the disease. Few are aware that she can’t infect other people or that she can’t go outside in the sun.
“I want to raise awareness about this ugly disease and get people educated,” she said.
“Maybe one day we will have the same acknowledgement as those with other diseases that are highly funded to find a cure.”
Details: www.gofundme.com/3r5o2bk
