Every year on June 19, World Sickle Cell Day is observed to raise awareness about
Sickle Cell Disease (SCD) and its impact on individuals and their families. SCD is a
genetic blood disorder that affects approximately 9,000 people in California,
100,000 people in the U.S., and 20 million people worldwide, yet often doesn’t
receive the attention it deserves. Because the disease results in red blood cells
being crescent or “sickle” shaped, these cells block blood flow through the body and
can lead to a range of serious health complications, including excruciating pain
crises, stroke, liver damage, and more.
World Sickle Cell Day serves as a platform to combat misconceptions, promote
understanding, and advocate for increased research as well as enhanced care
systems for those affected. In California, several organizations have been at the
forefront of supporting those with SCD, including the Center for Inherited Blood
Disorders and the Sickle Cell Disease Foundation, who together established
Networking California for Sickle Cell Care (NCSCC).
NCSCC is a groundbreaking initiative that aims to bring together healthcare
providers, researchers, patients, and advocacy groups to raise awareness about
SCD, promote early diagnosis, and emphasize the importance of comprehensive
care. By fostering connections, sharing knowledge, and mobilizing resources, this
initiative joins the global effort in combatting this disease and improving the lives of
patients.
Progress is being made in the fight against SCD as a result of NCSCC and the 12
adult specialized clinics across the state. By collaborating with pediatricians,
specialists, and adult care providers, this initiative bridges the gap in healthcare
services by taking a lifespan approach, aiming to optimize the health outcomes and
quality of life from birth into adulthood.
Remember, education and empathy are powerful tools in creating a more inclusive
and supportive society. Together, we can make a difference for individuals living with SCD and their families.