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Jump on the purple bus, spur lupus funding and research

Posted March 5, 2013

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— 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.

Purple bus promoted lupus Purple bus promotes lupus awareness and research

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.

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  • Relic Mar 6, 3:19 p.m.

    I have been the caregiver to a lupus/RA patient who has been disabled for 13 years. The lack of treatments and even knowledge by rheumatologists even at the hallowed Duke Hospital continues to astound me. I have seen this person go from a healthy, hard working mother to having to use a wheelchair and constantly fighting infections and organ problems. Count on it. I'll be there for that walk.

  • tawandaharris Mar 6, 12:10 p.m.

    I was diagnosed with lupus 15 years ago and had never heard of it. I literally had to educate myself. I am so proud of the fact that there are so many things being done to raise awareness. WRAL, we hope to see you all at our lupus walk April 21,2013 at NCSU Centennial Campus. We need all the publicity we can get!

  • cgf150 Mar 6, 11:47 a.m.

    I was diagnosed with lupus 20 years ago but was told I had probably had it since I was a teenager because of reoccurring health issues. Probably 90% of people do not know about or say they have never heard of it. We hurt bad enough physically without hearing comments "she's just lazy" "she looks to healthy to be that sick" "she's the reason their marriage broke up she never did anything with him". I use the word she because the majority of lupus patients are female. Like the old saying goes "until you walk a mile in their shoes keep your negative opinions to yourself". Thank you for the Purple Bus!!!