What Is Sickle Cell Disease?

Sickle Cell disease is a common and often life-threatening disease. It is an inherited, non-contagious hemolytic anemia (premature destruction of red blood cells with the release of hemoglobin) occurring in approximately 1 in every 400 African-American infants born in the United States each year. Individuals of Mediterranean, Arabian, Caribbean, South and Central American, and East Indian ancestry can also be affected.

Early identification can help prevent some of the serious medical problems associated with the disease. In New Jersey, universal newborn screening for Sickle Cell Disease began in 1990. Blood samples are drawn from newborns at hospitals and birth centers and submitted to the State Department of Health and Senior Services for laboratory analysis and reporting. Approximately 75 babies are identified each year with sickle cell disease in New Jersey.

Most of the medical care of sickle cell disease involves prevention and treatment of complications. A team of specialists works cooperatively with each child's health care provider to improve access to primary and specialty care services through Sickle Cell Treatment Centers located throughout the state of New Jersey. A list of these centers can be found in the appendix at the end of this document.

Like other children, children with this disease can look forward to a healthy, active and productive life; and can set their educational and career goals in accordance with their ambitions and innate abilities. Although a career in the military, or one that involves strenuous physical labor, may not be an option for some, there are people with sickle cell disease who have become doctors, lawyers, teachers, nurses, and other leaders in their communities.

Children with sickle cell disease should be urged to participate in school activities at an early age. They are asymptomatic most of the time. However, the disease has some complications that may be severe and life threatening, with periods of crisis occurring suddenly and with little warning. These complications and crises might not happen to every child but you need to be aware of the warning signs. Then the school, along with treatment centers and the child's health care provider, can assist the family in managing the child's health care needs.