Was your child or a family member recently diagnosed with Sickle Cell Trait or Sickle Cell Disease?

 

 

 

 

 

 

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Receiving A Diagnosis: The Journey from Cope to Hope-Region 4 Midwest Genetics Collaborative                                                          Care Coordination: The Family Perspective

 

Did you know that:

 

1. Illinois started universal newborn screening for sickle cell diseases in 1989; each year approximately 100 infants are diagnosed with a form of sickle cell disease.

 

2. All babies are tested while in the hospital shortly after birth when they receive a prick/stick on the heel of their foot. 

 

3. Test results will not immediately be available while you are in the hopsital with your baby, you will be notified by either/or the Illinois Department of Public Health (IDPH), your birthing hospital, your physician or the Sickle Cell Disease Association of Illinois by mail or phone.   

 

4. Sickle cell disease and sickle cell trait are detectable at birth via newborn screening. Early detection and parental notification of the infant’s disease state is a vital component in the prevention of infant death and timely treatment of the potential complications of the disease. Parental notification regarding the infant’s positive results for sickle cell disease, sickle cell trait and other abnormal hemoglobinopathies begins the essential process of awareness, education, counseling and connection with a medical home.

 

5. Since 2002, in collaboration with the Illinois Department of Public Health (IDPH), the Sickle Cell Disease Association of Illinois (SCDAI) has been the Illinois agency to find out if parents of newborns testing positive for sickle cell or other abnormal hemoglobins were notified of their infant's newborn screening result, provided education and counseling, ascertain if the newborn received confirmatory testing,  and provide a referral to a medical home/hematology team where the physician has up-to-date knowledge regarding treatment and care for children with abnormal hemoglobinopathies.

 

For additional information click on the image links below or contact the SCDAI office by phone (773) 526-5016 or send us an email to sicklecelldisease-illinois@scdai.org.