June 19th is recognized as World Sickle Cell Day. This day is set aside to help spread awareness about sickle cell disease and its variants among the general public and the medical community. 2020 marks the ten year anniversary of this awareness day. This year’s awareness day will feature a 24 hour campaign titled “Shine the Light on Sickle Cell.”
About Sickle Cell Disease
Sickle cell disease is a genetic, inherited disorder of the blood. This disorder is characterized by an abnormality affecting hemoglobin, which is found in red blood cells and is responsible for carrying oxygen. The abnormality causes blood cells to lose their typical circular shape and instead take on an elongated, sickle-like appearance. This is caused by a genetic mutation that may have arisen as a defense against malaria, although this benefit only occurs in people with sickle cell trait, not the disease. Symptoms begin to appear at around six months old and include swelling of the hands and feet, stroke, bacterial infections, and acute episodes of severe pain termed sickle cell crisis. Severity of disease varies, but these attacks can result in serious declines in health and organ damage. Treatment is mostly symptomatic, but bone marrow transplant has been curative in children. The disease most frequently affects people of African ancestry. Life expectancy is between 40 and 60. To learn more about sickle cell disease, click here.
In light of the ongoing coronavirus/COVID-19 global pandemic, the Shine the Light on Sickle Cell campaign has recently been reorganized into a collection of virtual events the participants can get involved in throughout the day. Some of these events and activities will include:
- Facebook Profile Picture Frame: This campaign will have its own profile picture frame. When you click on ‘add frame’ in the dialogue box, search for “Shine the Light on Sickle Cell” to find the frame.
- Twitter Party: Hosted by the Sickle Cell Disease Association of America, this event will feature videos from patients and educational tweets throughout the day. Follow along at @SCDAAOrg.
- International Zoom Meeting: Patients from around the world will share stories, presentations, entertainment, and music. Register here.
- Webinar: This webinar from Howard University titled “Role of Caregivers in Sickle Cell Disease and Impact of Covid 19″ will be held at 4:00 pm. Register for it here.
These are just some of the events that will be held as part of the campaign. Learn more about all that is happening on June 19th here.