In 2019, the Texas Legislature designated September as Sickle Cell Disease Awareness Month to shine a light on this hereditary blood disorder. September is also National Sickle Cell Awareness Month. As awareness grows, so does the capacity to help Texans who have the disorder.
In Texas, approximately one out of every 2,000 newborns have sickle cell disease (SCD). SCD predominantly affects Black families, who make up almost 85% of cases in Texas over the last few years — an increase from 79% in prior years. Hispanics account for over 5%, and other ethnicities combined make up about 10%.
Approximately 6,000 babies are born with sickle cell trait (SCT) each year. This means they do not have SCD but can still pass the sickle cell gene to their future children.
If one of the parents has SCT and the other has SCD, the odds of a child being born with SCD increase.
SCD causes the body to produce crescent- or sickle-shaped red blood cells. These cells have difficulty passing through small blood vessels and block normal red blood cells from entering tissue. Parts of the body that don't receive normal blood flow eventually become damaged. Complications can include anemia, vision loss, chronic pain, deep vein thrombosis, infection, pulmonary embolism and stroke.
Symptoms of SCD usually appear when an infant is around 5 months old. Early diagnosis helps parents access information and specialty health care for their child.
In 1983, Texas began screening newborns for SCD as part of the DSHS Newborn Screening Program. Blood samples are collected from a heel stick done 24 to 48 hours after birth and again at 1 to 2 weeks of age. The samples are sent to the DSHS Laboratory for screening.
SCD worsens over time. Evolving treatments can decrease complications and improve a person’s life. These treatments include stem cell transplantation, gene therapy and new drugs approved by the Food and Drug Administration.
"While modern medicine has come a long way, there are still many challenges faced by affected individuals," said Dr. Titilope Fasipe, who's a pediatric hematologist with Texas Children's Hospital in Houston, a member of the DSHS Newborn Screening Advisory Committee, and a person living with SCD. "However, awareness of the national guidelines for sickle cell disease can help manage symptoms and, in some cases, prevent symptoms from ever happening."
To learn more about SCD, visit the DSHS Sickle Cell Disease and Centers for Disease Control and Prevention Sickle Cell Disease webpages.