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World Sickle Cell Day: Empowering Patients with Resources and Support

World Sickle Cell Day: Empowering Patients with Resources and Support

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.