Sickle Cell Disease Program

We work to improve the health and well-being of patients affected by sickle cell disease within a kid-friendly, patient-centered, and family-focused environment. Our specialists are trained to treat children with sickle cell disease, meet their specific needs and counsel all family members on preventive treatment measures and serious complications.

Our program offers also transfusion services through an Ambulatory Infusion Center , as well as routine screening by transcranial Doppler ultrasound to assess the risk of stroke. Our clinic also includes specialized clinics for newborns, toddlers, and children taking the drug hydroxyurea, and those who received stem cell transplant or gene therapy.

Sickle cell disease has short- and long-term effects on virtually every organ system, including the brain, heart, lungs, spleen and eyes. Our program stresses preventative treatment to minimize serious complications when possible.

Early diagnosis and prevention of complications is extremely important for children with sickle cell disease. Treatment may include penicillin “prophylaxis,” pain medications, increased fluid intake, blood transfusions, hydroxyurea or stem cell transplant. Treatment varies with each child, and we collaborate with parents to develop the best plan for their children.

Support services are integral to our approach and we sponsor numerous programs, such as a parent to parent network, community education and outreach, annual social activities for patients and their families, scholastic achievement programs and a formal program for transitioning patients to adult care.

• Our team of pediatric hematologists are trained in treating all type of Sickle Cell diagnosis. Their goal is to provide the highest quality of comprehensive care; identify, prevent and treat complications; improve patients’ quality of life, and offer cutting-edge medical treatments, such as hydroxyurea, and curative options, including gene therapy and stem cell transplant. You can expect to see our hematologists during your clinic visit.
• The pediatric nurse practitioner evaluates every sickle cell patient during their clinic visits or blood transfusions under the supervision of a hematologist. You can expect to see our nurse practitioner at your transfusion visits in the Ambulatory Infusion Center. 
• The nurse specialists dedicated to our sickle cell program provide detailed disease education and monitor adherence to disease modifying drugs. You will connect with our nurse specialists at your clinical appointments, on the phone, and when utilizing MyChart. 
• A social worker provides support regarding the diagnosis and therapy, while identifying all necessary resources available to the family. The social worker is available to all patients at clinic visits, blood transfusion appointments, and inpatient admissions as needed.  
• Our genetic counselor is available to answer questions, provide education, and assist with family planning from diagnosis through all life stages. Our certified genetic counselor is likely the first person you will talk to from our team. They are available during clinic visits and by phone.  
• Our psychologists help support the mental health needs of our patients and their families and are available in the clinic and inpatient settings. Our dedicated neuro-psychologist is available to provide neurocognitive and behavioral testing to identify special learning needs in our patients that require support and interventions. 
• Our education liaison supports our patients in a school setting. Patients and families can speak with the Education Liaison at their clinic or transfusion appointments, and during inpatient admissions.  
• The program manager connects patients and families to one another, facilitates patient and family advocacy events, and communicates important information to our patients through an email list, in-person appointments, and is always available by phone. You will also spend more time with the program manager when you/your child approaches or enters healthcare transition (adolescence and young adulthood).  
• Research coordinators ensure that our patients have access to cutting-edge treatments and novel therapies through clinical trials. You may meet one of our research coordinators at a clinic visit or over the phone. If you are enrolled in a study, you will have more frequent communication with our research team then.

Our providers will create a specific and tailored plan based on our patient needs. Some plans may include the following treatment options  

• Blood transfusions: Some patients with sickle cell disease may need regular blood transfusions to reduce the risk of stroke and other disease-related complications. The frequency of transfusions needed varies with each patient. 
• Medication: Our providers may talk to you about starting disease modifying drugs (such as Hydroxyurea or other newer FDA-approved medications) that may help alleviate the symptoms of sickle cell disease and provide a better quality of life.   
• Curative options: Lurie Children’s offers both stem cell transplantation and gene therapy as curative options. The Comprehensive Sickle Cell Program works closely with the Gene and Cellular Medicine Program to offer highly specialized, state-of-the-art treatment options for sickle cell patients. To learn more about gene therapy and  sickle cell disease, explore our gene therapy resources. 

Learn more about sickle cell disease through these informative resources: