Sickle Cell Disease FAQ

If your child has sickle cell disease, we’re here to help your child live a healthy life and help your family feel informed.

How can I learn more about your program?

We welcome you to call us at (650) 502-7028 and speak with a nurse in our program to get more information. You can also have your child’s hematologist or primary care doctor reach out to us to coordinate care.

Can my child with sickle cell disease live a full, happy life?

We know that it’s frightening to learn that your baby has inherited sickle cell disease. However, with consistent care, a healthy lifestyle, and a sharp eye for changes in health, your child can live a quality life like any other child. Your child will need to avoid situations that can trigger a sickle cell crisis, including flying, visiting high altitudes, and getting too cold. You’ll also need to take extra effort to protect your child from sicknesses. We’re here to support you every step of the way.

What causes sickle cell disease?

Sickle cell disease, or sickle cell anemia, is a bleeding disorder that’s inherited when both parents carry a mutated copy of a gene. The gene causes red blood cells to become misshapen, resembling a sickle. These cells can die and stack up, blocking blood flow and causing pain, infection, or fatigue. With consistent, quality care, your child can live a full and happy life.

What are the symptoms of sickle cell disease?

Anemia occurs when there are not enough normal red blood cells, causing fatigue. Other symptoms include pain throughout the body, swelling in the hands and feet, a damaged spleen that can lead to frequent infections, possible vision problems, breathing problems, an increased chance for asthma, sleep apnea, and delayed growth. Consistent care can help avoid problematic symptoms.

Who is most susceptible to sickle cell disease?

Sickle cell disease affects those of African American descent most often, occurring in about 1 of every 365 births. It’s also slightly more prevalent in people of Latinx descent, occurring in 1 in every 16,300 births. It is equally experienced by males and females. Both parents must carry a copy of the sickle cell gene for it to affect a child. One copy doesn’t cause symptoms.

How do you diagnose sickle cell disease?

Sickle cell disease is often diagnosed at birth or within the first few months of a baby’s life. A simple blood test at birth screens for sickle cell by looking for abnormal hemoglobin protein, and every newborn in the state of California is tested through the Newborn Screening Program. However, a positive test for abnormal hemoglobin doesn’t immediately mean that a child has sickle cell disease, so further testing is needed. This might include more blood and lab tests, transcranial Doppler ultrasound (TCD), or genetic testing. We receive referrals through Stanford’s Newborn Screening Program and community doctors. We also participate in public health surveillance initiatives with the California Newborn Screening Program and the California Sickle Cell Data Collection Program.