GameChangers: Ask Lupus, Changing The Game By Raising Awareness
PHILADELPHIA (CBS) -- Aniysha, Sakeena, and Kareema Trice have a lot in common. At 30, 28, and 26, the sisters are close in age, love shopping, travel, and send lots of texts to each other every day.
"I'm a nurturer," says Kareema, then, pointing to Aniysha, "she's the bossy one."
Sakeena is the book worm. But they all share something else. The sisters each have Lupus, a hereditary autoimmune disorder. The sisters' maternal grandmother has the disease as well.
Aniysha, Sakeena, and Kareema are the A-S-K in ASK Lupus, a non-profit organization created to educate, advocate for, and support black women dealing with lupus. Black women are three times more likely to develop the disorder and are often misdiagnosed, yet many have never heard about the disorder or its symptoms
"When they told me, I was like 'okay- what is it and how do I get rid of it?'" says Aniysha. "Once I learned that it doesn't go away and that you live with it for the rest of your life, I just tuned it out and focused on my school work."
Aniysha was diagnosed with Lupus Nephritis in 2010. She says she brought her books with her to the hospital where she kept up her studies for a Masters Degree. Although the drug and alcohol counselor wasn't the first to begin exhibiting symptoms, she was the first sister to get a diagnosis.
Aniysha suffered kidney failure and now needs dialysis three times a week as a result of the disorder. She also battled an episode of brain cancer. Although she's now cancer free, the diagnosis means she has to wait five years for a kidney transplant.
"I hope my sisters' never get as severe as mine," she says.
Sakeena discovered she had lupus while in undergraduate school at Morgan State University.
"Once [Aniysha] was diagnosed," says Sakeena, "we kind of knew it was Lupus."
Sakeena began experiencing lung complications and seizures. She received some misdiagnoses, but eventually it was determined that she has SLE, or Systemic Lupus Erythematosus, a form of lupus that attacks the lungs, joints, and skin.
A lawyer in New York, Sakeena too focused on her studies to get her through.
"It's because of our mom really," says Sakeena, "I would call her and say 'this is what I'm going through,' she would say 'alright have your two minute pity party- now what are you going to do next?'"
Kareema, a student at Lincoln University, hasn't gotten her official diagnosis but has exhibited symptoms for years.
"When I was getting ready for my prom I got a rash all over my body," she says, "my feet get swollen and I can't walk, and I even had a tumor on my foot."
But, like her sisters, it hasn't stopped her.
Along with their mother, Veronica Phillips, the sisters pump their frustration with the disorder into ASK Lupus. Holding events to raise money for testing, educating the community, and using social media to support black women dealing with the disorder.
"Not only are we helping people, but we are helping ourselves," says Sakeena, "we want people to know: you may have Lupus, but Lupus doesn't have you."
"I want us to be able to provide support to people all over the world," says Kareema,
"I want Lupus to be something that's talked about and something that people don't have to be ashamed about," says Aniysha.
Together, these sisters are changing the game by raising awareness and by showing that life can be good, that you can work and help others even with a Lupus diagnosis.
For more on ASK Lupus, go to asklupus.org.
