Faith-Based Initiative for Sickle Cell Disease & Trait Education, Awareness and Screening

While 1 in 400 African-Americans have sickle cell disease, 1 in 12 are carriers of the gene that can be passed down from parent to child and cause sickle cell disease. This condition is called sickle cell trait. Sickle Cell Trait is not a disease though there are certain situations where sickle cell trait can result in the need for medical attention.

Universal Newborn Screening for sickle cell disease (SCD) was added to the uniform panel in Pennsylvania in September 1992. Any person born prior to 1992 should be screened to verify their sickle cell trait status. This means that there is a significant population who are well within their childbearing years who would benefit from knowing and understanding their sickle cell trait status. Our goal is to educate this at-risk population as to their risk of having a child with SCD and to remove the stigma surrounding sickle cell disease.

Premarital preparation in the faith-based setting is not a novel concept. Historical success has been noted in the Tay-Sachs model using a faith-based approach to premarital testing and counseling. This has drastically reduced the number of unions that result in having children with SCD. We use a non-directive approach to genetic counseling. University of Pittsburgh Genetic Counseling Students and the Genetic Counselor from the Children’s Hospital of Pittsburgh of UPMC assists in the pre-education and follow-up counseling for the prospective parents.

If you are interested in having your place of worship participate, contact us at support@cscfkids.org.

Education

  • Sickle Cell 101
  • Takes approximately 20 min.

Screening

  • Hemoglobin Electrophoresis
  • 5-7 minutes per screen

Follow-up

  • Genetic Counseling
  • Takes approx. 10-20 min. if positive