Reaching out to help kids with sickle cell disease

A. Kyle Mack, MD, physician leader of Children’s Memorial’s Cooperative Sickle Cell Donor Program, visits one of his patients.

Children’s Memorial Hospital, in partnership with the Red Cross, has launched an innovative outreach initiative, the Cooperative Sickle Cell Donor Program, to increase awareness in Chicago’s African-American community of the need for life-saving blood donations to help children with the disease. Sickle cell disease is an inherited genetic blood disorder that affects 70,000 African-Americans in the U.S. Each year 400 children are treated for the disease by specialists in Children’s Memorial’s Comprehensive Sickle Cell Disease Program.

Sickle cell disease results in red blood cells that contain abnormal hemoglobin. Red cells are normally shaped like donuts, but in patients with sickle cell disease they are shaped like sickles, which makes them stiff and result in decreased blood flow to organs and tissue. When an individual with sickle cell has decreased blood flow, they can develop such complications as stroke, bone pain and pneumonia.

With no universal cure for sickle cell disease, some patients rely on frequent blood transfusions to help prevent serious complications. The best blood match for African-Americans with the disease usually comes from an African-American donor, says A. Kyle Mack, MD, an attending physician in Children's Memorial Center for Cancer and Blood Disorders and physician leader for the program. Although a patient with the disease can receive blood from a person of a different ethnic group, there are proteins on red blood cells that are more common among similar ethnic groups. When these proteins do not match those of the recipient, it may cause the patient to become resistant to red blood cell transfusions over time.

Because African-Americans comprise nearly 13 percent of the population in the U.S. but represent only 1 percent of blood donors, Children’s Memorial physicians approached the Red Cross about initiating a program to encourage more blood donations in African-American communities. Children’s Memorial physicians, nurses and staff, along with the Red Cross, have been recruiting potential donors by holding blood drives at churches, schools and businesses. They urge donors to request a “blue tag” on their donation to indicate that the blood will be used to help some of the 400 children treated at Children’s Memorial each year for sickle cell disease.

The first blood drive took place at Apostolic Faith Church on Chicago’s South Side, where Horace Smith, MD, director of the Comprehensive Sickle Cell Disease Program at Children’s Memorial, serves as pastor. Additional community blood drives will be held on a quarterly basis.

Sickle cell disease research at Children’s Memorial

A strong research program in sickle cell disease complements the clinical care offered by Children’s Memorial’s Comprehensive Sickle Cell Disease Program. The hospital is currently one of nine centers around the country participating in the National Institutes of Health-sponsored Sickle Cell Disease Clinical Research Network.