Mar. 01, 2013

Uniting Against Lupus

Sorrow struck Clark Atlanta University (CAU) in Atlanta in May 2012: Simone Watson, a well-liked senior who was about to receive her bachelor’s and master’s degrees in accounting, lost her battle with lupus. She was 22.

Simone’s death brought together friends, strangers, and the university to educate people about lupus and begin what they hope will become a national movement to raise lupus awareness on college campuses.

A native of Chicago, Simone was diagnosed with lupus kidney disease when she was 16. “She didn’t want anybody to feel sorry for her or to treat her differently,” Simone’s mother, Cassandra Watson, recalls. “Even though she may have been in pain, or it was difficult for her going to classes or to sleep at night, she just wanted to be treated like everybody else.”

Simone loved CAU and was devastated when she had to miss a semester of her junior year due to a lupus flare. And she was an outstanding student, earning top grades in a rigorous five-year accounting program. She had planned to continue her studies and earn her Ph.D. “Simone wanted to teach,” says her sister, Tiffany.

According to Tiffany, Simone enjoyed working with kids, but her true passion was education. Despite her rigorous course load, she made time to tutor her classmates in finance.

“We figured out pretty quickly that Simone was the smartest one in the class,” Simone’s friend and classmate Shelley Smith remembers. “She was a positive person and she never let things get in her way. She was just a really good person.”

Smith was part of a group that organized a memorial service on campus for Simone. They decided to make lupus awareness part of the program.

“Everyone knows about AIDS and cancer, but not lupus, and a lot of us didn’t know about lupus until Simone had said that she had it,” Smith says. “I didn’t know that young African American women are the [primary] demographic for lupus, [but] it’s the perfect demographic at my school to learn about it, since the majority of the school’s students are African American young women.”

To get information about lupus for the memorial, Smith contacted Teri Emond, program director of the Lupus Foundation of America’s Georgia Chapter. Emond attended the CAU memorial service for Simone on May 10, 2012. “When I was there, I was approached by the president of the university, by students, and by CAU Nurse Educator Karla Scipio, all saying, ‘We need a program about lupus on this campus, and we need to spread awareness,’” says Emond.

Simone’s mother and sister accepted Simone’s degrees at CAU’s graduation later that month. Simone had the second-highest grade point average at her school and was named class salutatorian.

And then, a week after graduation, the unthinkable happened: A second CAU student died from complications of lupus. Ashmith Jean Loiseau of Jonesboro, GA, a freshman psychology major who loved soccer and the Boston Celtics, had only recently been diagnosed with lupus.

The Clark Atlanta community was stunned. Students were now clamoring for information, says Scipio. “People didn’t have a lot of facts about lupus and how it affects the African American community, especially young women,” she says.

Alia Cooper, Simone’s friend and the president of the Women’s Leadership Council at CAU, organized a lupus workshop on campus. She contacted Scipio for help. “People are alarmed and really don’t know what lupus is, what it’s about, who does it affect. I told Nurse Scipio, ‘I think it is imperative to have some type of presentation that involves getting that information to the students,’” Cooper explains.

Scipio thought a lupus workshop was a great idea, and she introduced Cooper to Kim Schofield, advocacy co-chair of the LFA, Georgia Chapter. Schofield proposed they honor Simone and Ashmith by expanding the workshop beyond Clark Atlanta’s campus. “I thought, why not extend it to the whole Atlanta University center, which [also] includes Spelman, Morehouse, and the Morehouse School of Medicine?”  Schofield says. Schofield’s plan to include the historically black colleges and universities (HBCUs) in the Atlanta area would mean the event would reach four times as many students than if it targeted CAU alone.

Emond agreed. “We need to talk to these young people who are at risk, [because] this is when lupus hits a lot of people,” she says.

HBCUs Unite Against Lupus: What You Need to Know was held Sept. 26, 2012. Emond, Cooper, Schofield, and Scipio worked together to organize an evening that honored Simone and Ashmith and educated college students about lupus. It was to be a partnership of Clark Atlanta University and the Lupus Foundation of America.

Although she didn’t attend the symposium, Cassandra Watson was extremely pleased with how the event came together. “It warmed my heart,” she says. “I just thought it was so wonderful that the university and the LFA, Georgia Chapter collaborated.”

By all accounts, the symposium was a huge success. More than 100 students attended, many of whom later contacted the LFA, Georgia Chapter to volunteer.

Scipio says some attendees came to see her at the campus health services office. “As a result of the symposium, we had students come in and ask if they might have lupus,” she says.

Simone’s sister, Tiffany, who attended the event that honored her sister, was touched to be part of it. “I thought the symposium was absolutely amazing. It was very informative, and I think that’s what was most important to me. Simone would have loved the idea of it. She was always about being educated and learning as much as you can.”

Shelley Smith agrees. “Simone would have liked more people knowing about lupus, not just for herself but for others as well, so there could be more awareness about it and end up having more research, so that one day we can find a cure for it,” she says.

The symposium may be over, but the women who organized it don’t consider their work complete. “This is the beginning,” Schofield says. “I’d love to see every LFA chapter take this model and reach out to the colleges and universities [in their area]. The lupus message needs to reach the generation that is most vulnerable.”

Her wish is already coming true: Two weeks after the Clark Atlanta symposium, Emond was thrilled to receive an email from a student at Fort Valley State University in Fort Valley, GA, who attended the event in Atlanta and wanted to know if they’d consider doing the program again at her school.

Expansion of the program is just what the organizers hoped for. “That’s exactly what we wanted this to be: a springboard. We didn’t want to only go into Clark Atlanta University to honor these two young women, and have that be all we did,” Emond says. “The Unite Against Lupus symposium was a way to get a foot in the door, to crack open that door, and be able to spread awareness on other campuses.”

Cassandra and Tiffany Watson are pleased the program will continue. They think it is a wonderful legacy for Simone.

“I think that’s amazing,” Cassandra says, “and I think it’s an excellent idea. The students need to be aware of lupus. Parents need to be aware of it, professors, the community at large needs to be aware of it. And hopefully with more and more awareness, [there will be] more and more research into finding a cure for it.”

“Simone’s legacy is that her circles are spreading,” Emond says. “Her legacy is awareness and reaching out and teaching young people about lupus. The circles are only going to get bigger.” 


Related Stories

Magazine | Jul. 01, 2013

Nick Cannon’s Fight Against Lupus

Nick Cannon is a successful entertainer, DJ, entrepreneur, husband, and father. He has always welcomed whatever challenges have come his way. But he wasn’t prepared for the biggest challenge he’d face.

Magazine | Dec. 09, 2013

Lupus Now Celebrates Its Tenth Anniversary

Lupus Now magazine editor Jenny Thorn Palter and Lupus Foundation of America President & CEO Sandra C. Raymond talk about the tenth anniversary of the only national publication devoted to helping people deal with the complexities of lupus.