No. 1 Inherited Blood Disease Effects 100,000 Americans

News Release
For Immediate Release: 11/8/2023

Allan Urlis, Office of Communications, (402) 432-1532,

- Blood donations needed -

Lincoln, NE. – An estimated 100,000 Americans have sickle cell disease, making it the most common inherited blood disorder in the United States. One in 13 African Americans carry the sickle cell trait, according to the Sickle Cell Disease Association of America.

People with sickle cell disease may need as many as 100 units of blood each year, according to the American Red Cross, and donations always are needed. The Nebraska Community Blood Bank's Sickle Cell Donor Program is a way to donate blood to help treat individuals living with sickle cell disease.

Sickle cell disease triggers intermittent episodes of pain, difficulty with vision, and fatigue. It also can cause infections, strokes and organ failure including the kidneys, liver, eyes and spleen. Damage to the spleen makes sickle cell disease patients, especially young children, easily infected by certain bacteria. Fever in someone with sickle cell disease must be taken seriously.

The blood disease is usually found at birth with a blood test during routine newborn screening tests. Approximately 2,000 babies a year are born with sickle cell disease. This genetic condition is inherited when a child receives two sickle cell traits, one from each parent.

Sickle cell disease can occur in any population, although is common in certain ethnic groups. Approximately 9% of African Americans in the United States have the sickle cell trait but only about 16% of adults of childbearing age in the United States know they have it, even though newborn screening has been in place in most states since at least the 1990s. When both parents have the sickle cell trait, they have a 25% chance of having a child with sickle cell disease with every pregnancy. An estimated one out of every 375 African American children is affected by sickle cell disease.

The best way to find out if and how sickle cell disease runs in someone's family is to see a genetic counselor.

Women can have a healthy pregnancy with early prenatal care and careful monitoring throughout the pregnancy. However, women with sickle cell disease are more likely to have problems during pregnancy that can affect their health and that of their preborn baby. A woman and her partner should get tested for the sickle cell gene if they are planning to have a baby. Testing is available at most hospitals or medical centers, from sickle cell disease community-based organizations, or at local health departments.

The following two guidelines should be followed, after a diagnosis of sickle cell disease has been confirmed:

  1. Regular visits to a comprehensive sickle cell program or a pediatric hematologist and strict compliance in antibiotic administration are crucial to the health and future well-being of the baby. Parents should understand the importance of twice-daily doses of prophylactic penicillin as an effective measure to reduce both morbidity and mortality from pneumococcal infections in infants with all forms of sickle cell diseases.

  2. Parents of infants with sickle cell disease should be instructed in all aspects of caring for a child with sickle cell disease. Parents should be able to accurately check the infant's temperature and be able to recognize early symptoms of complications, including the warning signs of inactivity, fever, pallor, and respiratory distress. Parents should be taught to palpate the infant's spleen and to recognize splenic enlargement. Parents must understand the importance of prompt assessment of the infant by a pediatric hematologist when fever, pallor, unexplained irritability, diarrhea, vomiting, or other signs of illness are present. A fever of 101° F or greater requires immediate medical evaluation. 

Health maintenance for patients with sickle cell disease starts with early diagnosis and includes penicillin prophylaxis, vaccination against pneumococcus bacteria, and folic acid supplementation.

Treatment of complications often includes antibiotics, pain management, intravenous fluids, blood transfusion and surgery. Surgery can be avoided with proper preventative care. The most common surgery is a splenectomy, but children/adults do not need to lose their spleen if they are properly managed by hematology. All treatments are backed by psychosocial support. Like all patients with chronic disease, patients are best managed in a comprehensive multi-disciplinary program of care. Many individuals with sickle cell disease live well into adulthood. Stem cell transplants can, in some cases, cure sickle cell disease, but not all individuals are eligible for this procedure and there are associated risks. 

Click on the link for Nebraska Community Blood Bank's Sickle Cell Donor Program and to learn how to help ease the pain for those living with sickle cell disease.

For more information visit: Local health departments may provide a list of support services within the community and have information on early intervention services. In Nebraska, call 402-471-6733 or visit:

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