Jump on the purple bus, spur lupus funding and research
Posted March 5, 2013 10:25 p.m. EST
Updated March 5, 2013 11:57 p.m. EST
Chapel Hill, N.C. — A big purple bus is hitting Triangle roads to raise awareness and advance lupus research.
Twelve years ago, when KeKe Grady was just 20, health problems got in the way of her love for softball.
“It was difficult transition for me because I went from being a Division I athlete in college – to having to quit,” Grady said.
Flu-like symptoms caused her to feel tired and made her joints hurt – but a year and a half with no clear diagnosis made the problem a cruel mystery.
“It is a mystery disease,” said Dr. Keisha Gibson, a pediatric nephrologist at UNC. “I think of lupus as being like the ultimate betrayal of the body. It can affect many different organ systems – it can manifest in many different ways.”
The new bus, with interactive video displays and magical mirrors, helps unravel the mystery of lupus.
“It actually pops up and tells you about what might be happening in your body if you actually were diagnosed with lupus,” said Christine John-Fuller, president and CEO of the Triangle Lupus Foundation.
The body starts making proteins that attack tissues in the body, so problems can occur on the skin, in joints, or in organs – like the heart or kidneys.
It affects an estimated 1.5 million Americans – 90 percent are women, usually between the ages of 15 and 44 – and it lasts a lifetime.
Grady says she’s been on chemotherapy for more than four years to treat her lupus.
Several drugs are used to help manage the symptoms, but they often have side effects.
There’s a great need for research to find better drugs with fewer side effects.
“We need to move into an area where we’re not just focused on managing the disease with drugs, but eventually moving toward a cure – and maybe, one day, even prevention,” Gibson said.
Bus tour organizers hope the effort will spur interest in funding research – which is why KeKe Grady is excited.
“I love this – that they’re teaching people, that they’re educating people,” Grady said.