Sickle cell disease

Upon learning your child has sickle cell disease, you’re probably wondering what comes next. From your first appointment through early treatment and beyond, our care team spends time with your family to develop an individualized plan.

You may be wondering what causes this disease. With sickle cell disease, it means your child inherited abnormal genes from both parents that affect the way their red blood cells are formed. Instead of their usual smooth “O” shape, red blood cells become stiff and sticky and look like a sickle or a “C.” These misshapen cells can block blood vessels, cause pain and lead to problems with internal organs.

Support for the whole family

At our sickle cell disease clinic in Oak Lawn, you’ll find our team of care experts ready to work closely with you and your family to help meet your child’s needs – both clinical and emotional.

At our clinic, you’ll receive:

• A comprehensive treatment plan with your child’s individual needs in mind
• Genetic counseling
• Education about sickle cell disease
• Transitional care from childhood through adulthood

We also recognize the importance of teamwork. That’s why we’re part of the Chicagoland Children’s Health Alliance, partnering with Pediatrics at NorthShore University HealthSystem and the University of Chicago Medicine Comer Children’s Hospital in pediatric hematology. Through us, your child has access to even more specialists and programs.

Inspiring kids: Nyiah’s story

You'd never know Nyiah undergoes monthly treatments for sickle cell disease. Nor would you know she suffered a stroke at age 3. But sickle cell disease doesn’t keep Nyiah down. In fact, she and her family are very involved with Be the Match, an organization that encourages people to join the bone marrow registry as potential bone marrow donors.

Types of sickle cell disease

Our sickle cell team provides your child with comprehensive care, including specialized apheresis therapy to replace red blood cells. We have a dedicated nurse educator and social worker in our child-friendly clinic.

Our team of experts is here to find the right treatment for your child. Some of the types of sickle cell disease we treat include:

• Sickle cell anemia (hemoglobin SS disease): The most common and most serious type of sickle cell anemia, this occurs when there’s a large amount of hemoglobin S in the red blood cells and no normal hemoglobin.
• Sickle-hemoglobin C (hemoglobin SC disease): This milder form of sickle cell disease occurs in children who have inherited 2 abnormal hemoglobin genes in their red blood cells, 1 hemoglobin S and 1 hemoglobin C.
• Sickle thalassemia disease: This form of sickle cell disease indicates a large amount of hemoglobin S in a child’s red blood cells, combined with a second type of abnormal hemoglobin. Severity of this illness can vary.

Chances of having sickle cell disease

In the U.S., sickle cell anemia affects about 70,000 people. The disease occurs in 1 out of every 500 African American births and 1 in every 1,000 to 1,400 Hispanic births.

If parents both have sickle cell trait, here are the chances their child will inherit the disease or trait:

• 25% chance of a child with sickle cell anemia
• 50% chance of a child with sickle cell trait
• 25% chance of a child with normal hemoglobin

Treatment and services

We combine the latest research along with your child’s needs to provide treatment plans and education to help empower you and your child to successfully manage their disease from childhood through adulthood.

We’ll work with you develop to an individual treatment plan for your child. Recommended treatments may include:

• Blood transfusions: We provide blood transfusions and apheresis therapy in the Keyser Family Cancer Center, on the Oak Lawn Campus.
• Education: A school coordinator can help your child keep up with schoolwork and receive school support and services.
• Routine care: Your child will likely see us several times a year for blood treatments and check-ups. They’ll arrive to find familiar faces and a warm, welcoming atmosphere.
• Medical tests: We carefully watch for potential effects of the blood disorder on your child and take quick action when needed.
• Medications:
  • Penicillin
  • Folic acid
  • Hydroxyurea to decrease the number of sickle cells while stimulating the production of healthy red blood cells
• Pain management: We’ll work closely with our pain team to promote appropriate pain control and work toward an individualized treatment plan for your child.
• Red blood cell apheresis: This special transfusion filters out a percentage of the sickle red blood cells and replaces them with normal, healthy red blood cells. This therapy may be given to:
  • Children who have had a stroke
  • Children who are at a high risk of having a stroke
  • Children who have developed other serious complications
• Team approach to care: Our multidisciplinary care team includes a dedicated nurse coordinator as well as a social worker to help your entire family learn to cope with sickle cell disease.

Additional resources

Sickle Cell Disease Association of America

Sickle Cell Disease Association of Illinois