Sickle Cell

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Sickle cell disease is an inherited blood disorder that affects the ability of red blood cells to carry oxygen to cells throughout the body.

At UT Southwestern Medical Center’s Comprehensive Sickle Cell Program, we know that living with sickle cell disease brings unique economic and emotional challenges, but patients don't have to navigate them alone. While there’s no quick fix for this complex disease, patients can find long-term wellness with clear guidance, personalized care, and ongoing support.

What Is Sickle Cell Disease?

Sickle cell disease is a group of inherited blood disorders. It affects hemoglobin, the protein in red blood cells that carries oxygen. In sickle cell disease, abnormal hemoglobin causes red blood cells to become stiff and sticky, forming the shape of a sickle when they lose their oxygen.

These sickle cells can die early, causing a shortage of red blood cells. They can also block small blood vessels. This can lead to pain, infection, stroke, acute chest syndrome, and other serious complications.

Sickle cell disease can affect people of many backgrounds. In the U.S., it most often affects African American people. It also affects Hispanic or Latino people, people of Caribbean ancestry, and people with ancestry from the Middle East, India, Latin America, and the Mediterranean region, as well as Native American communities.

What Are the Types of Sickle Cell Disease?

The type of sickle cell disease depends on the hemoglobin genes a person inherits from each parent. Common types include:

HbSS: A person inherits a hemoglobin S gene from both parents. This type is often called sickle cell anemia and is usually the most severe form.
HbSC: A person inherits a hemoglobin S gene from one parent and a hemoglobin C gene from the other parent. This type is usually milder than HbSS.
HbS beta thalassemia: A person inherits a hemoglobin S gene from one parent and a beta thalassemia gene from the other parent. This type includes HbS beta-zero and HbS beta-plus thalassemia. HbS beta-zero is usually more severe.

Less common types include HbSD, HbSE, and HbSO, when a person inherits a hemoglobin S gene from one parent and another abnormal hemoglobin gene from the other parent.

Sickle cell trait is different from sickle cell disease. People with sickle cell trait inherit one sickle cell gene and one normal hemoglobin gene. They usually do not have symptoms, but they can pass the gene to their children.

What Are the Symptoms and Complications of Sickle Cell Disease?

Symptoms of sickle cell disease can vary from person to person. They can also change over time. Most babies do not show symptoms until they’re about 5 or 6 months old.

Early symptoms can include:

Yellow skin or yellowing of the whites of the eyes
Extreme tiredness or fussiness from anemia
Painful swelling in the hands and feet
Pain crisis (sickle cell crisis)

All major organs can be affected by sickle cell disease. The spleen is often damaged when sickled cells block healthy blood flow.

Without a normally functioning spleen, the body has a harder time fighting infections. This is especially serious for infants and young children with sickle cell disease.

Other complications of sickle cell disease include:

Acute chest syndrome: Also called sickling in the chest, this serious complication can be life-threatening. It can happen suddenly, often when the body is under stress from infection, fever, or dehydration. Sickled cells can stick together and block oxygen flow in the small blood vessels of the lungs. Symptoms can look like pneumonia and may include fever, pain, and severe cough.
Anemia: This is the most common symptom of sickle cell disease. It happens when the body does not have enough healthy red blood cells to carry oxygen. Severe anemia can cause paleness, tiredness, and delayed growth and development.
Jaundice: Symptoms include yellowing of the skin, eyes, and mouth. This happens when bilirubin builds up as the body breaks down sickled red blood cells.
Pain crisis or sickle crisis: Also called a vaso-occlusive crisis, this happens when sickled cells block blood flow. Pain can happen anywhere, but it is most common in the chest, arms, and legs. In infants and children younger than age 3, it can cause painful swelling in the fingers and toes.
Splenic sequestration: This life-threatening complication happens when red blood cells become trapped in the spleen. It can cause a sudden drop in hemoglobin and make the spleen enlarged and painful. Repeated episodes can cause permanent spleen damage.
Stroke: This serious complication can happen when sickled cells block blood flow to the brain. It can cause lasting problems with movement, speech, learning, or other brain functions.

What Clinical Trials Are Available for Sickle Cell Disease?

UT Southwestern conducts clinical trials focused on improving the understanding and treatment of sickle cell disease. Eligible patients may have the opportunity to participate in studies evaluating innovative treatments and care strategies. Patients can talk with their care team to learn whether a clinical trial is right for them.