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Facts & Stats You Should Know about Sickle Cell Disease (Plus Awareness Events)

September is National Sickle Cell Awareness Month, designated by Congress to help focus attention on the need for research and treatment of sickle cell disease. Here’s information you should know; plus upcoming events to support sickle cell awareness.

The Sickle Cell Disease Association of America’s (SCDAA) theme for this year’s awareness month is Sickle Cell Matters 2021.

What is Sickle Cell Disease?

Sickle cell disease (SCD) is an inherited blood disorder in which red blood cells may become sickle-shaped and harden. For a baby to be born with sickle cell disease, both parents must carry a sickle cell trait. Sickle cell disease is not contagious, and there is no universal cure.

The Facts

  • About 1 in 13 African Americans carry the sickle cell trait and many do not know they have it.
  • An estimated 100,000 people in U.S. have SCD.
  • Approximately 2,000 babies are born with SCD annually in the U.S.
  • On average, diagnosis is made at birth.
  • 8% of African Americans are carriers of SCD.
  • Latinos have the second most common incidence of SCD in the U.S.

The blockage of blood flow caused by sickled cells leads to complications including:

  • Chronic severe and unpredictable pain
  • Anemia
  • Approximately 2,000 babies are born with SCD annually in the U.S.
  • Frequent infections.
  • Swelling in extremities.
  • Fatigue.
  • Delayed growth.
  • Vision problems/blindness.
  • Lung tissue damage.
  • Kidney disease.
  • Stroke.
  • Shortened life expectancy.

Photo credit: Sickle Cell Disease Association of America, Inc


  • Sickle cell disease is a global health problem.

Staying healthy with sickle cell disease involves:

  • Pain management
  • Blood transfusions
  • Self-care including eating well, exercising and drinking water.

The search for a cure…

Bone marrow (stem cell) transplants can, in some cases, cure sickle cell disease, but not all individuals are eligible for this procedure and there are associated risks. Read more about this NIH initiative:

How Can You Support Sickle Cell Matters 2021? 

You can share this article, or download a PDF flyer. Also, use hashtags on social media: #SickleCellMatters2021, #SickleCellAwarenessMonth, #SCDAA2021AwarenessMonth and #SCDSCTmatters.

SCDAA encourages everyone to be a part of this national effort to increase awareness about sickle cell disease and sickle cell trait during the month of September. Individuals and organizations can join their efforts to bring attention to sickle cell disease by engaging elected officials for proclamations, hosting awareness events, distributing educational information to dispel the myths about sickle cell disease, and lighting public spaces, buildings and landmarks red.

Photo credit: CDC

SCDAA Events

Unless otherwise noted, all SCDAA’s events will be held virtually.

Community and Member Events

Learn more:

Courtesy of Sickle Cell Disease Association of America.

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