Sickle cell disease is an inherited condition passed from parents to children through genes. This condition affects a special protein inside red blood cells called hemoglobin. Hemoglobin carries oxygen from the lungs to the rest of the body and returns carbon dioxide back to the lungs.
Normal hemoglobin is called hemoglobin A (A for adult). A person who has sickle cell makes a different kind of hemoglobin called hemoglobin S (S for sickle). This abnormal hemoglobin causes the red blood cells to change their shape. Instead of being round, the red blood cell shape looks like a banana or a sickle (a hand tool used to cut wheat or tall grass). This sickle shape of the red blood cells gives sickle cell disease its name.
As a result of the abnormal shape, the red blood cells become hard and sticky, causing them to have trouble moving through small blood vessels. When they clog up these blood vessels, blood cannot bring oxygen to the tissues. This causes pain and eventually damages the tissue.
There are several types of sickle cell disease:
Children with sickle cell disease may experience the following symptoms or complications:
Every child with sickle cell disease experiences different symptoms and complications.
Sickle cell trait is not the same as sickle cell disease. This condition occurs when a child inherits only one sickle globin gene (S) from one parent and a normal beta globin gene from the other parent. Sickle cell trait cannot develop into sickle cell disease. A child with sickle cell trait may be referred to a hematologist early in life to confirm and learn more about the diagnosis. Patients with sickle cell trait should be able to lead normal, healthy lives. They may need genetic counseling when they become parents to determine the risk of having a child with sickle cell disease.
Doctors at Riley at IU Health often diagnose sickle cell disease through a newborn screening test, which is performed on every child born in Indiana. Newborn screening allows doctors to identify those with sickle cell disease as early as possible. Early prevention and education improves the quality of lives of children. Children with a positive screen are referred to a hematologist, a doctor who specializes in the condition. The hematologist will do additional testing to confirm the diagnosis and identify the type of sickle cell disease.
Individualized treatment plans are given based on your child's age, weight and tolerance for certain medicines. Some treatment options could include:
Children with sickle cell disease achieve a good quality of life with precautions and adherence to medicines and clinic appointments. While they may miss school or go to the doctor more often than others, they can live full and happy lives.
Visit the trusted websites below to learn more about sickle cell disease, including information about support groups and research.
Riley at IU Health offers a broad range of supportive services to make life better for families who choose us for their children's care.
This organization aims to create awareness of sickle cell disease and promotes research and education.
This Indiana organization exists to aid and enhance the lives of those affected by sickle cell disease and associated disorders by providing services, education and advocacy.
Be The Match, operated by the National Marrow Donor Program, is the largest donor registry in the world. The registry matches patients with appropriate bone marrow donors.
The CDC helps communities and citizens fight against disease of all kinds. The organization provides data and statistics as well as recent articles and findings related to sickle cell disease.
The hematologists at Riley at IU Health are currently conducting several research studies on sickle cell disease. These studies will help doctors advance the management and treatment of the condition, improving the lives of those with sickle cell disease. Speak with your child's doctor to learn more about our research initiatives.
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