These Three Philly Sisters Are Here to Help Lupus Patients Feel Less Alone
Aniysha, Sakeena, and Kareema Trice founded the nonprofit ASK Lupus to raise awareness of the autoimmune disease — and provide support for those affected by it.
So you wake up one day with aches and pains. Who hasn’t, right? You assume they’ll go away in a few days, attributing the twinges to the weather or sleeping in an awkward position. But they stick around. You start to feel fatigued, even when you get enough shut-eye, and decide to go to the doctor. But these nondescript symptoms aren’t enough for her to give you a specific diagnosis.
Or perhaps you have a red rash that spreads across your cheeks and nose. Experts would likely recognize this as a malar, or butterfly, rash — one of the classic signs of the mysterious autoimmune disease commonly known as lupus. But a physician who’s less familiar with the condition might think first of rosacea or maybe even Lyme disease, especially here in Pennsylvania, which has the highest number of new cases of the tick-borne illness. You get passed off to another doctor, un- or misdiagnosed.
Unfortunately, it’s easiest to pinpoint lupus (which, like all autoimmune diseases involves the immune system attacking itself) when it affects critical organs like the lungs, the heart, the brain, or the kidneys. That’s what happened to Aniysha Trice, a Philadelphia native who was diagnosed with lupus nephritis, or lupus that impacts the kidneys, when she experienced sudden kidney failure in 2010. Eventually, she developed related conditions such as high blood pressure, diabetes, seizures, and even lymphoma. Almost 10 years after her diagnosis, she’s still waiting for a kidney transplant.
Despite all that, Aniysha received her master’s degree in human services in 2012 and works full-time as a counselor. But she wishes she would have had more knowledge and support in the beginning stages of her diagnosis — especially given that no one’s sure what triggers lupus, although we do know genetic factors are at play. “I am living, I am breathing, and I feel good today,“ Aniysha says. “But, when I was first diagnosed with lupus, I wasn’t sure exactly what it was. I didn’t get much support. I didn’t have resources.”
That’s why Aniysha and her two sisters, Sakeena and Kareema, decided to start the nonprofit ASK Lupus. The trio, all of whom have lupus or lupus-related symptoms, wanted to raise awareness of the disease, particularly for fellow African-American women. Ninety percent of those diagnosed with lupus are female. Women of color with lupus are more likely to have severe symptoms and die of the disease.
ASK Lupus collects money for lupus research; the Trices have participated in the Lupus Loop, a 5K and 2.5-mile fundraising walk held annually by the Philadelphia Tri-State Chapter of the Lupus Foundation of America. But the sisters’ primary goal is to create safe spaces for those affected by lupus. “A lot of times, people in the family may not understand because it affects people so differently,” Aniysha says. “We want to provide a space where people can understand you, where other lupus warriors can come and connect. We want people to feel as if they’re not alone and not suffering in silence.”
These events range from networking roundtables to yoga and meditation sessions to support groups. (Follow ASK Lupus on Instagram for details on future events.) Their next free support group and panel discussion will be held Sunday, May 26th, at 2930 Jasper Street, Suite 104, from 1 to 4 p.m. — and they encourage anyone to come. “Half the people who come out to the support group don’t have lupus,” Sakeena says. “They just want to understand how they can help. In order to beat lupus and raise awareness, everyone has to make it their own issue.”