Non-profit helps Lupus-sufferers spread their wings
Keva Brooks Napper’s own struggle with Lupus inspired her to start Beautiful Butterflies, a nonprofit that assists other’s living with the autoimmune disease.
Lupus causes the body to attack its own immune system, causing inflammation that can affect organs, joints, skin and blood cells. It is more common in women, especially those who are African American, Asian and Hispanic, and is most commonly diagnosed in those from age 15 to 50. The disease is often called “the cruel mystery,” Napper said, because it has no known cause or cure and an unpredictable array of symptoms. Napper derived the name of her nonprofit from one common lupus symptom – a butterfly-shaped rash that develops across the face.
“I definitely want (Beautiful Butterflies) to be educating about what Lupus is, about what the symptoms are and how you can be diagnosed with something but it doesn’t have to define who you are, you can have something and live a prosperous life with it,” said Napper, who is married to acclaimed musician Calvin Napper.
In 2003, Napper fell ill with fatigue, hair loss and a fever that wouldn’t break. She was diagnosed with Lupus.
“I didn’t know a lot about it; I didn’t really know anyone else with Lupus, so I started doing what you really shouldn’t do, which is doing research on the Internet, and I instantly felt like I was going to die because all the information on the Internet was just gloom and doom,” she said.
The disease has taken its toll on Napper. During a church service in 2004, she had a stroke, which caused her to suffer from grand mal seizures. The seizures can make her lose consciousness and shake uncontrollably. Napper spent two weeks in ICU after doctors discovered two blood clots in her brain.
Fatigue, joint pain, hair loss, sensitivity to the sun, inflammation of the lungs and rashes still come and go. Napper said she never knows which symptom she’ll have next. Often her symptoms aren’t evident to others, so friends and family members didn’t know how sick she was. She used to be reluctant to talk about her condition outside of Winston-Triad Chapter of the Lupus Foundation meetings.
“Lupus is like a hush-hush disease, you just don’t talk about it … One day, I decided I wasn’t going to be quiet anymore and talked to my parents and said I wanted to start a nonprofit for Lupus,” Napper said. “…I didn’t see a lot of Lupus advocacy in my community and wanted to do more, wanted to educate more. I’m an educator by nature, so this was something that was affecting me and something affecting my community, so I decided to use my voice to educate my community.”
She formed the nonprofit in January 2011. Beautiful Butterflies holds a Lupus support group in Greensboro and other events to raise awareness and will push for legislative measures to support research and those who suffer from the disease. Last year, the agency held a panel discussion that included Dr. Louis Sullivan, a former secretary of the U.S. Department of Health and Human Services.
A former full-time first-grade teacher, Napper is now a substitute teacher in Guildford County so that she can devote more time to her non-profit, whose board is chaired by her father, Bishop George Brooks, pastor emeritus of Mt. Zion Baptist Church of Greensboro.
“Our vision is, of course, is to educate, and where it will ultimately end up is that we will have educated people who will spread the word and relieve some of the pain and suffering because of their knowledge of the pain and, of course, as with any foundation, to grow it so we can help more and more people in a broader spectrum,” said Brooks, who added that the agency is currently looking for new board members.
Beautiful Butterflies successfully lobbied the General Assembly to declare May as Lupus Awareness Month in North Carolina. The group’s next legislative push is for more funding for Lupus research, which is sorely lacking, according to Brooks. The Food and Drug Administration approved its first drug in more than 50 years for Lupus, Benlysta, just two years ago.
Beautiful Butterflies’ monthly support group attracts sufferers from ages 14 to 60. Napper also keeps busy by giving educational lectures, including a series she conducts at historically black colleges and universities like Winston-Salem State and N.C. A&T. She is also planning the agency’s popular annual Lupus Awareness Luncheon, slated for March, and its annual golf tournament in May and fall 5k Walk/Run. A Lupus Awareness Day at Carowinds is also in the works.