September is National Sickle Cell Awareness Month: Spreading Rare Disease Awareness

The month of September is recognized as National Sickle Cell Awareness Month in the US. This is a time to spread awareness about sickle cell disease among the general public and the medical field. As part of this event, the Sickle Cell Disease Association of America (SCDAA) has a theme for this year: Sickle Cell Matters 2023. There are a wide variety of ways that you can help play your part and participate in spreading awareness about this rare disease.

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.

Getting Involved

You can help spread awareness about this disease by contacting elected officials to make proclamations, organizing awareness events, lighting landmarks, public spaces, or buildings red, distributing educational materials about the disease, and more.

Events going on during the month include:

  • #MoveForSickleCell as part of Walk with the Stars, being held on September 16. Learn more about it here.
  • Virtual Blood Drive: Give blood to help treat people living with the disease. Click here to get involved. 
  • Trivia Fridays: The SCDAA posts sickle cell trivia questions every Friday this month. Stop by to learn something new!

You can check out other events for National Sickle Cell Awareness Month here.

Download the awareness month Social Media Toolkit here.

You can also pitch in this month by helping sickle cell advocacy groups like DreamSickle Kids, a Patient Worthy partner organization.

 

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