The Norton Children’s Sickle Cell Disease Program cares for children from all over Kentucky and Southern Indiana. Our blood disorder specialists also treat adults, creating a solution for patients and families seeking lifelong care.
Our hematologists are board certified and fellowship trained to provide expertise and the latest treatments for sickle cell anemia. They are on staff at Norton Children’s Cancer Institute, affiliated with the UofL School of Medicine.
Our Sickle Cell Disease Program is one of the leading pediatric treatment programs in the country, with two decades of experience. We offer children and teens automated red blood cell exchange, which is more effective at replacing red blood cells that contain sickle cell hemoglobin with healthy red cells — without causing iron overload.
Sickle cell disease is a group of inherited blood disorders characterized by chronic anemia, periodic episodes of pain and other complications.
The disease affects the red blood cells. Normal red blood cells are smooth, round and soft. Their shape and softness enable them to move easily through the blood vessels to carry oxygen to all parts of the body. In sickle cell anemia, production of abnormal hemoglobin causes the red blood cells to become hard, pointed, sticky and shaped like crescents or sickles.
When these hard and pointed red cells go through small blood vessels, they often get stuck and block the vessels. They also stick to and damage the lining of larger blood vessels.
Damaged vessels become scarred, narrowed and sometimes completely closed. The blockage of blood flow through blood vessels can lead to pain, stroke and damage to many organs.
In the United States, sickle cell disease is most common among African Americans. The condition also is present among people of Latinx and Caribbean descent. Around the world, the condition is found in people with Arab, Greek, Italian, Sardinian, Turkish, Maltese and southern Asian heritage.
Nationally Recognized Sickle Cell Disease Care
The National Alliance of Sickle Cell Centers recognized the Norton Children’s Sickle Cell Disease Program as one of the nation’s top comprehensive pediatric sickle cell treatment centers. Comprehensive sickle cell centers offer up-to-date, quality medical care with an experienced staff that develops comprehensive treatment plans for patients and their families. Recognized centers are able to prescribe all of the available disease-modifying therapies for sickle cell disease.
In addition to our board-certified pediatric hematologists, our team includes certified nurse practitioners, hematology nurse specialists, infusion center staff, social workers, dietitians and others who specialize in caring for the special needs of children and teens.
- Transfusion services
- Apheresis, including erythrocytapheresis, also known as automated red blood cell exchange
- Newborn screening and genetic counseling
- Pulmonary care to treat asthma, which is common in children with sickle cell disease
- Psychosocial services to help children and families cope with the social and emotional challenges that come with managing a chronic illness
- Cerebrovascular care for children considered at risk for cerebrovascular issues, including stroke, and kids who have experienced cerebrovascular issues
- Imaging services to detect or evaluate potential issues such as gallstones, stroke and narrowed blood vessels
- Testing available to measure liver iron and cardiac iron concentration by noninvasive, MRI-based methods
Sickle Cell Disease Care Beyond Treatment
Our dedication to patients expands beyond disease treatment. Through participation in two federally funded clinical research studies, we are advancing care that focuses on transitioning treatment from pediatric to adult providers by:
- Expanding education about sickle cell disease to providers in all specialties
- Increasing patients’ awareness of today’s treatment options
- Collaborating with the sickle cell community and health care teams to strengthen support and health outcomes
- Ensuring all children and teens with sickle cell disease have a health care home
Our comprehensive program provides children and teens with a structured curriculum to help ensure a seamless transition to adult care. Our team works with patients to prepare them to manage their own health care needs as they move into adulthood and an eventual change from pediatric care to adult care providers.
Our providers offer support, education and skills for lifelong health as well as a tour of an adult-service hospital to help avoid any interruptions in care.