Zedrick Cook, an 8-year-old from Gary, Indiana, was diagnosed with sickle cell disease (SCD) shortly after birth. His mother, Sherita Johnson, knew she carried the sickle cell trait, but wasn’t fully aware of its potential risks. None of her four older children have the disease.
Zedrick is one of more than 1,700 Hoosiers living with sickle cell disease, a rare inherited blood disorder in which red blood cells become hard, sticky, and crescent-shaped. These abnormal cells can clump together and block blood flow, leading to severe pain, organ damage, infections, and even strokes.
In Indiana, the Regenstrief Institute and the Indiana Hemophilia and Thrombosis Center have identified at least 1,695 individuals with SCD. The median age is 21 years, and 87 percent of patients identify as Black. Most cases are found in major urban areas like Indianapolis, Gary, and throughout Lake County.
The condition disproportionately affects people of African descent due to its genetic connection to regions historically plagued by malaria. According to the CDC, more than 90 percent of individuals with SCD in the U.S. are non-Hispanic Black or African American. The disease occurs in 1 out of every 365 Black births and 1 out of every 16,300 Hispanic births.
Instead of the smooth, round shape of healthy red blood cells, sickle cells are rigid and crescent-shaped. This makes them prone to clumping in blood vessels, causing painful blockages that can lead to chronic complications like anemia, swelling of the hands and feet, and heightened vulnerability to infection.
Sickle cell disease was first observed in the U.S. in 1904 by Dr. Ernest Edward Irons, a medical intern in Chicago, who noticed abnormal red blood cells in the blood of Walter Clement Noel, a dental student from Grenada. His supervising physician, Dr. James B. Herrick, later published a formal case report in 1910—the first known description in Western medical literature.
Long before that, however, the disease was recognized in African medical traditions. In some regions it was called “ogbanje”—a term used to describe children who died young, thought to “come and go” due to high infant mortality.
The name “sickle cell anemia” was introduced in 1922 by physician Vernon Mason, describing the blood cells’ distinct shape under a microscope.
Treatment remains complex. Bone marrow transplants are currently the only known cure, though they are not widely available. Most patients rely on blood transfusions, pain management, and medication. Advocacy groups such as the Sickle Cell Disease Association of America, the Sickle Cell Foundation of Illinois, and the Indiana Hemophilia and Thrombosis Center continue to push for better care, awareness, and research funding.
Public figures have also helped raise awareness. Singer Tionne “T-Boz” Watkins of TLC has spoken openly about living with SCD. Actor Larenz Tate, a native of Chicago’s West Side, carries the sickle cell trait and is a longtime advocate. Former NFL wide receiver Santonio Holmes—a Super Bowl champion—also lives with the disease, and established the III & Long Foundation, after his son, TJ, was diagnosed at age 9.
Some biographers confuse the disease with the trait, noting figures like jazz-trumpeter Miles Davis and Temptations singer Paul Williams had sickle cell disease. While neither publicly disclosed their diagnosis, Davis may have had the trait. Williams, known for his choreography and gritty vocals, allegedly struggled with sickle cell disease and alcohol dependency to manage pain, according to biographers. He died in 1973 at age 34, with his death ruled a suicide, though some disputed the cause.
In a press statement, Sherita Johnson said her son Zedrick has been hospitalized more than 50 times and has undergone numerous blood transfusions. She sought help from the Indiana Hemophilia and Thrombosis Center, which now provides clinic services in Gary for families like hers.
Johnson told advocates ahead of World Sickle Cell Day on June 19 that learning her son’s diagnosis left her heartbroken—but determined. “I decided to learn everything I could,” she said.
World Sickle Cell Day was established by the United Nations in 2008 to draw attention to the health disparities and pain endured by patients around the globe. This year’s theme, “Every Nation, Every Drop – Unite by Donating Blood,” underscores the importance of voluntary blood donations for managing the disease.
International and local events include blood drives, educational workshops, and genetic counseling. In India, President Droupadi Murmu will participate in the National Sickle Cell Eradication Mission–2047, which aims to eliminate the disease in the country through screening and treatment.
To support those affected, local residents are encouraged to participate in blood donation campaigns. For more information or to schedule a donation, contact the American Red Cross or your nearest hospital.
Zedrick’s journey—marked by resilience and love—serves as a powerful reminder of the need for urgent attention, support, and medical progress in the fight against sickle cell disease.