Sickle Cell Disease and Sickle Cell Trait

Go to: Sickle Cell Disease Prevalence | Screening | Symptoms and Complications | Management and Treatment | Treatment Centers | Community Based Organizations | Additional Resources

Go to: Sickle Cell Trait Screening | Prevalence

Sickle Cell Disease

Sickle cell disease is a genetic blood disorder that occurs when a person inherits two sickle cell genes—one from each parent. This affects hemoglobin, a protein that carries oxygen throughout the body, causing red blood cells to become crescent- or "sickle"-shaped. This can cause anemia, severe pain and other symptoms. There are several types of sickle cell disease, including HbSS, HbSC, and HbS beta-thalassemia. People with sickle cell disease may face barriers to care and frequently experience stigma in healthcare settings, often compounded by structural racism.

Prevalence

Sickle cell disease is the most common inherited blood disorder in the U.S., affecting an estimated 100,000 people. Sickle cell disease is more commonly found among people of African descent, although people of Hispanic, South Asian, Southern European, and Middle Eastern backgrounds can also be affected.

Approximately 10% of the people in the U.S. with sickle cell disease live in New York State, with the majority in New York City area. In 2023, about 100 babies were born with sickle disease in New York City. The Bronx (18) and Brooklyn (13) had the highest number of babies born with HbSS, the most severe form of the disease.

Symptoms and Complications

Sickle cells can block flow in blood vessels, leading to complications like anemia, pain episodes (called vaso-occlusive events), chronic pain, organ damage, acute chest syndrome, and stroke.

Symptoms can vary from mild to severe, so it's important to get screened to determine the specific type of sickle cell disease you have.

Management and Treatment

Managing sickle cell disease involves a combination of short- and long-term pain management and preventing complications. People with sickle cell disease are at higher risk for infections, so staying up to date on vaccinations is essential. Follow your health care provider’s recommendations.

Treatment options for sickle cell disease include:

• Medications such as pain relievers or hydroxyurea, a commonly prescribed medication to reduce the frequency of pain crises and blood transfusions. Other medications are also available.
• Blood transfusions
• Therapies such as a bone marrow (stem cell) transplant and gene therapies have shown promise in resolving symptoms and preventing severe complications.

If you're enrolled in Medicaid in New York State, you may be eligible for care coordination through the Health Homes program.

Sickle Cell Trait

Sickle cell trait is a genetic condition that occurs when a person inherits one copy of the sickle cell gene. People with sickle cell trait are carriers of the gene but do not have the disease. However, they can pass the gene to their children. Most people with sickle cell trait can lead healthy, normal lives. In rare cases, factors such as severe dehydration or intense physical activity may trigger health complications.

• Learn more at American Society of Hematology: Sickle Cell Trait

Prevalence

Sickle cell trait affects about 3 million Americans. In the U.S., about 1 in 12 people of African descent carry the trait, though it can also be found in people of Hispanic, South Asian, Southern European, and Middle Eastern backgrounds. Globally, more than 100 million people have sickle cell trait. It is most prevalent in regions where malaria is common, as the trait offers some protection against the disease.

In New York City, 2,602 babies were born with sickle cell trait in 2023: 960 in the Bronx, 764 in Brooklyn, 317 in Manhattan, 481 in Queens, and 80 in Staten Island.

Screening

In the U.S., all newborns are screened for sickle cell trait and sickle cell disease. New York State has been conducting these screenings since 1975, along with tests for other genetic conditions. Many people with sickle cell trait may not know they carry it. Understanding your sickle cell status is important for making informed health and family planning decisions.

If you were born outside the U.S. or don't know your status, you can get tested by visiting a primary care doctor, OB/GYN (for prenatal screening), or genetic counselor. Whether you're testing for the trait or the disease, the process is usually the same — a simple blood test. Prenatal screening can also diagnose sickle cell disease before birth. If both parents carry the trait, genetic counseling can help guide your options.

Treatment Centers in New York City

There are several centers in NYC where people with sickle cell disease can get pediatric and adult sickle cell care. In the event of a medical emergency seek medical care or call 911 immediately.