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ABOUT SICKLE CELL DISEASE

What is sickle cell disease?

Sickle cell disease is a genetic condition that affects the body’s red blood cells. It occurs when a child receives two sickle cell genes—one from each parent. In someone living with this disease, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”.

What types of health problems are connected to sickle cell disease?

When sickled red blood cells travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such infection, acute chest syndrome and stroke. The pain experienced by people living with sickle cell disease can vary in intensity and last for a few hours to a few weeks.

Who is affected by sickle cell disease?

While the disease is most common among African Americans, other racial and ethnic groups are affected, including Latinos and people of Middle Eastern, Indian, Asian and Mediterranean backgrounds.

How is sickle cell disease diagnosed and treated? Is there a cure?

Sickle cell disease is most often discovered at birth during routine newborn screening tests at the hospital.

There is no single best treatment for all people with sickle cell disease. Treatment options are different for each person depending on their symptoms.

Currently, the only cure for sickle cell disease is a bone marrow or stem cell transplant. However, these treatment options come with serious risks, require a close donor match (like a sibling) and are only used in severe cases.

Clinical trials related to a sickle cell disease cure that will work for all patients are being conducted as part of the National Institutes of Health’s Cure Sickle Cell Initiative. The goal of this initiative is to advance the development of new gene- and cell-based therapies for sickle cell disease within the next five to 10 years. See the NIH map of privately and publicly funded clinical studies around sickle cell disease in the U.S.

What is the U.S. Department of Health and Human Services doing to advance sickle cell disease education and research?

As a department we are working to:

  • Break down barriers for those who seek treatment
  • Find a cure beyond bone marrow or stem cell transplant
  • Educate health care providers on how to identify and treat patients in pain crisis
  • Bridge the gap between sickle cell disease pediatric care to adult care for patients
  • Connect across various HHS agencies and with sickle cell disease advocacy groups
Sickle Cell image - Image of normal red blood cell and sickle cell

Webinars

Click to view webnar - Sickle Cell Transitional Care from Childhood to Adulthood: The Role of Community Health Workers - YouTube link

This webinar was held on Thursday, September 20, 2018. View Webinar.




Thursday, February 28. 2019 - Holistic Health and Sickle Cell Disease: A Focuse on Mental and Behavioral Health - 1pm - 2:15 PM ET

This webinar was held on Thursday, February 28, 2019. View Webinar.




June 2019 Webinar coming soon

The next webinar will be held in June 2019.
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SICKLE CELL STORIES

Sickle Cell affects thousands of people in the United States. OMH’s #SickleCellStories features a conversation with Assistant Secretary for Health ADM Brett P. Giroir and Surgeon General VADM Jerome M. Adams about HHS efforts to address SCD & the stories of people living with SCD, family members and advocates.