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Sickle Cell Awareness Month

The Many Faces of Sickle Cell Disease

Sickle cell disease (SCD) affects people of many racial and ethnic groups. In the United States, 90,000 to 100,000 people―mainly Blacks or African Americans―have SCD. The disease occurs among about 1 of every 500 Black or African-American births and among about 1 out of every 36,000 Hispanic-American births. Other people affected include those of Mediterranean, Middle Eastern, and Asian origin. In addition, more than 2 million people carry the sickle cell gene that allows them potentially to pass the disease on to their children.

Photo: A familyAbout Sickle Cell Disease

Among those with SCD, their red blood cells become hard and sticky and look like a C-shaped farm tool called a "sickle". The sickle-shaped cells die early, which causes a constant shortage of red blood cells. When a person doesn't have enough red blood cells, they have a condition called anemia. Also, when these misshaped blood cells travel through small blood vessels, they can get stuck and clog the blood flow. Whenever this happens, it results in severe pain and organ damage and can cause serious infections.

People with SCD can live productive lives and enjoy most of the activities that people without SCD do. These are some things that people with SCD can do to stay as healthy as possible:

  • Get regular checkups. Regular health checkups with a primary care doctor can help prevent some serious problems.
  • Prevent infections.Common illnesses, like influenza quickly can become dangerous for a child with SCD. The best defense is to take simple steps to help prevent infections. See tips to help avoid getting an infection.
  • Learn healthy habits.People with SCD should drink 8 to 10 glasses of water every day and eat healthy food. They also should try not to get too hot, too cold, or too tired.
  • Look for clinical studies.New clinical research studies are happening all the time to find better treatments and, hopefully, a cure for SCD. People who take part in these studies might have access to new medicines and treatments.
  • Get support. People with SCD should find a patient support group or other organization in the community that can provide information, assistance, and support.

Closing the Survival Gap: The Role of Public Health on Sickle Cell Disease

In recognition of the National Center on Birth Defects and Developmental Disabilities 10 Years of Service celebration the Centers for Disease Control and Prevention (CDC) is partnering with the Sickle Cell Disease Association of America (SCDAA) to host the field event "Closing the Survival Gap: The Role of Public Health on Sickle Cell Disease". The "Closing the Survival Gap" theme speaks to providing education for and outreach among affected populations to improve quality of life and life expectancy for those living with SCD.

SCD can be a life-threatening condition and social, economic, cultural, and geographical barriers often limit access to comprehensive care. Advances in patient advocacy preventative screenings, as well as access to resources, have increased the quality of life and life expectancy of people with SCD.

Please join us to learn about what you can do in the fight against SCD.

The field event is being held September 30, 2011, from 2:45 to 4:15pm, in conjunction with the 39th Annual SCDAA Convention at the Marriott Memphis Downtown Hotel and Conference Center in Memphis, Tennessee.

What is CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) doing about Sickle Cell Disease?

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) has prioritized its work with an immediate focus on blood disorders that affect those most in need of information, resources, and access to care. SCD is one of several blood disorders that are considered priorities. NCBDDD's work with SCD is based on a comprehensive public health approach that includes data collection and monitoring activities to identify risk factors and develop, test, and ensure widespread adoption of effective prevention strategies.

Determining How Many People Have SCD

Currently, there are no data systems in the United States to determine the number of people who have SCD and other hemoglobinopathies (that is, disorders affecting red blood cells), nor to fully describe how these conditions affect an individual's health. CDC is working with the National Heart, Lung, and Blood Institute to plan and implement a pilot data collection project for hemoglobinopathies. This project is called RuSH—the Registry and Surveillance System for Hemoglobinopathies.

Educating People About SCD

NCBDDD strives to educate people about SCD by providing free materials to families affected by the disease. These materials discuss how to live well with SCD, how to prevent infections, and when to see a doctor. In addition, CDC is working to raise awareness of SCD among the general public.

Exploring Opportunities: SCD Working Group

CDC also has begun an agency-wide SCD multidisciplinary working group to explore opportunities to address unmet needs in research, surveillance, and health education. The working group will unite the efforts and energies of all groups within CDC that are working on this disease.

The goals of the SCD working group are to:

  • Provide information and increase awareness of SCD and sickle cell trait at CDC and among external audiences such as health care providers, community organizations, affected patients and their families, and the general public.
  • Increase dialogue and collaboration between CDC and key partners in the sickle cell community, including other federal partners such as the National Institutes of Health and the Health Resources and Services Administration.
  • Increase research and surveillance to determine the prevalence of SCD, develop better management guidelines, and more effectively monitor complications of the disease.

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