Nivia is a full-time Howard U. student, content creator, Girl Boss, and sickle cell advocate. On her best days she finds time to get it all done while receiving her treatment!
Propped up on a reclining hospital bed, tubes are sending her blood through a machine running nearby. The staff tending to her treatment are laughing with her as she tries to hold still while also chatting in FaceTime with colleagues about a documentary she is helping create about sickle cell. This is Nivia Charles, full-time university student, public speaker, campaign model and social media content creator, and future real estate developer. This 28-year-old woman has a lot going on…and she is also managing an excruciating condition, sickle cell disease.
“Things can be challenging and can feel impossible,” says Nivia when reflecting on life with sickle cell. “But it’s something I live with and even thrive with…I can’t be 100 percent positive all the time but I can be optimistic more often than not.”
Nivia comes in for her treatment once a month. She gets “fueled up” as she calls it, with a blood cell exchange.
The American Red Cross partners with hospitals to provide donated blood for therapeutic apheresis, including red blood cell exchange, for patients. This process involves removing affected red blood cells from a patient’s body and replacing them with healthy red blood cells. Since the disease distorts soft and round red blood cells and turns them hard and crescent shaped, a patient’s blood has difficulty flowing smoothly and carrying oxygen to the rest of the body, which can cause severe pain, tissue and organ damage, anemia, and even strokes.
Nivia receives five or six units of donated blood every time, which relieves the pain and prevents complications of the disease. Despite her blood treatments, Nivia can still experience sickle cell crises and severe complications, requiring hospitalization.
Nivia had to find a new health care team when she moved from the Bay Area in California to Washington, D.C. to attend Howard University. She stresses the importance of finding doctors who specialize in sickle cell disease and understand their patients’ concerns.
A good healthcare team is actively, “believing you when you say you are in pain and empowering you as an expert in your own care,” she explains.
Nivia is adamant about successfully setting up adequate medical care as she navigates frequent treatments and occasional hospitalizations while at school. She will graduate with her Baccalaureate degree from Howard University in May 2026 with a major in community development and a minor in political science.
“I will have earned this degree in blood, sweat and tears – literally,” she says.
In addition to school, she also makes time to be an advocate for people with the disease. Sickle cell disease is the most common genetic blood disorder in the U.S. During September, which is Sickle Cell Awareness Month, she speaks at the Annual Cayenne Wellness Educational Summit educating people about her disease. Previously she helped champion a Red Cross initiative to increase blood donors from HBCUs, Historically Black Colleges and Universities. The focus was on Black colleges because blood donors who are Black are almost three times more likely to be a match for patients with sickle cell disease. Closely matched blood is critical to ensuring that patients don’t develop an immune response to donated blood that is not compatible.
While Nivia works to increase awareness about the prevalence of sickle cell, she also wants to make it known how important donated blood is to managing the disease. She expresses her gratitude to the blood and platelet donors who provide this critical component of her treatment.
“From the depths of my heart to the expanse of my spirit, I would say thank you,” she says. “For giving other people another chance at life. Thank you for keeping us alive.”
It seems nothing can stop Nivia as she launches her career, and Red Cross blood donors will provide the “fuel” that powers this dynamite woman!
Nivia is pictured here as a Selected Speaker and Spoken Word performer for a sickle cell conference.
Support all the urgent humanitarian needs of the American Red Cross.
Find a drive and schedule a blood donation appointment today.
Your time and talent can make a real difference in people’s lives. Discover the role that's right for you and join us today!
