September is National Sickle Cell Awareness Month. Sickle Cell Disease (SCD) is an inherited blood disorder. It’s a lifelong condition that causes the red blood cells to harden and form a sickle shape. This restricts blood flow which can lead to serious health problems including:
- Chronic pain, often severe
- Intense fatigue
- Frequent infections, like pneumonia
- Stroke
- Kidney, liver, and heart disease
Who Gets SCD
Approximately 100,000 people live with SCD in the United States.
- More than 90% of people with SCD are non-Hispanic Black
- 3%–9% are Hispanic or Latino
How SCD is Diagnosed
SCD is usually diagnosed at birth. Usually, it’s tested and diagnosed at birth during routine newborn screening tests at the hospital. Pediatricians and primary care providers can also provide screenings. In Virginia, routine screening for SCD in newborns has occurred since 1989. Since 2017, an average of 68 babies were born each year with SCD in Virginia.
If You Have SCD
- Always share your medical history with your healthcare provider(s). This way they can properly identify and treat any complications of SCD you currently have or may develop.
- This is especially important when visiting an emergency department.
- Take steps to take care of yourself to help prevent and reduce any common SCD complications.
- If you need a treatment provider, please see this list of SCD treatment centers around the state.
Virginia Statewide Sickle Cell Disease Registry
The Virginia Sickle Cell Disease Registry is a secure database that houses important information on sickle cell disease in Virginia. VDH began collecting information for this registry from partners in August of 2025 after a law was passed in 2024. In December of this year, all providers will be able to submit their required reporting through an online portal. In addition, people with SCD will also be able to self report.
The registry collects people’s name, address, sex at birth, race, ethnicity, and gender. It also includes a person’s type of sickle cell disease. The registry is HIPPA compliant, and the information remains confidential. People with SCD can opt out if they do not want their information shared.
We encourage people with SCD to not opt out as the registry information is vital to help:
- Increase Resources and Referrals: SCD patients will receive more resources about SCD. They will also receive better referrals for services.
- Improve Diagnosis and Treatment: The Registry will help doctors and public health experts learn more about the disease itself. This will help improve how they diagnose and treat SCD.
- Improve Care and Quality of Life: The Registry will help identify what needs individuals with SCD have. Public health experts will use this information to improve services and care provided to individuals with sickle cell disease.
- Support Research: The Registry will allow public health researchers to better understand:
- How common SCD is in Virginia
- Risk factors
- Survival rates
- Raise Awareness: The information collected from the registry can be a voice for those with SCD. It can be used to educate public health officials and legislators on the experience and needs of those with SCD to help advocate for changes to support those with SCD.
More Information
For more information about SCD, please visit: