What is sickle cell disease?

Sickle cell disease is a complex red blood cell disorder. In people living with sickle cell disease, there are changes to red blood cells that can cause damage throughout the body

Portrait of a man wearing glasses and a ‘Living with sickle cell’ name badge taped to a corkboardPortrait of a man wearing glasses and a ‘Living with sickle cell’ name badge taped to a corkboard

Red blood cells can become misshapen into a “sickle shape,” like a crescent moon.

Illustration of a healthy red blood cell

Healthy red blood cells

Illustration of a sickled red blood cell

Sickled red blood cells

Sickle cell disease can lead to serious complications over time, like organ damage.

Who’s at risk for sickle cell disease?

  • Sickle cell disease affects people from many backgrounds
  • In the United States, sickle cell disease most commonly affects Black and African American people
  • Sickle cell disease also affects Hispanic and Latino people and those of Middle Eastern, Mediterranean, and South Asian descent

Sickle cell disease can impact quality of life and may lead to serious complications that can impact long-term health.

There are many types of sickle cell disease, but all are
serious and have an increased risk of complications

The type of sickle cell disease you have depends on your genes

In sickle cell disease, there is a change in one of the genes that makes a part of hemoglobin (Hb). Hemoglobin is a protein in red blood cells. This genetic change affects how Hb behaves.

What are genes?

  • Genes are the instructions the body uses to make proteins. These instructions are like a recipe
  • When a gene is changed, it is called a gene variant. Think of a variant like a variation in the recipe
Type of sickle cell diseaseHow common is it?*
HbSSAbout 75% of people with sickle cell disease
HbSCAbout 18% of people with sickle cell disease
HbS beta-plus thalassemiaAbout 4% of people with sickle cell disease
HbS beta-zero thalassemiaAbout 2% of people with sickle cell disease

*A large international study of 674 people with sickle cell disease published in 2011 looked at the genetic types in people of mainly African descent living in the Americas and the UK.

No matter the type, all forms of sickle cell disease are considered serious. This is because all forms of sickle cell disease can lead to life-threatening complications.

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