A Sista Gurl Living With Sickle Cell Anemia: How do you manage life with sickle cell disease?

Thursday, September 10, 2009

How do you manage life with sickle cell disease?

Learn what triggers, or sets off, painful events. Triggers often include cold temperatures, wind, dehydration, and too much exercise. Low oxygen caused by cigarette smoke, high altitude, and plane flights is another common trigger.

Make sure that your child takes antibiotics regularly until age 5 to prevent infections. And make sure he or she receives all the usual immunizations on schedule.

Your child can take part in normal school activities. Make sure that teachers understand your child’s special needs, like needing frequent drinks and bathroom trips and avoiding overexertion and cold temperatures.

People with sickle cell disease and their families face ongoing stress. A support network can help ease stress and worry. Ask your doctor if there is a support group in your area. You can also find Web sites on the Internet where you can ask questions, share your feelings, and get advice.

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September is National Sickle Cell Disease Awareness Month

The Virginia Sickle Cell Awareness Program

Sickle Cell Disease is one of the most common genetic disorders in the United States primarily affecting African-Americans. In Virginia, Sickle Cell Disease is the most prevalent disorder identified by newborn screening tests. Approximately 75 newborns are identified each year though newborn screening. The screening enables early diagnosis of the disease so that life-prolonging treatment begins in the first few months of life. Sickle Cell Disease primarily affects those of African descent, but also is found in people who trace their ancestry to South and Central America, the Middle East, India, Italy, Greece and Turkey.

Sickle Cell Disease primarily affects those of African descent, but also is found in people who trace their ancestry to South and Central America, the Middle East, India, Italy, Greece and Turkey.

In Virginia, one in 325 babies born to African-American parents is affected by Sickle Cell Disease. It is estimated that more than 155,000 Virginian's have sickle cell trait, meaning they do not have the disease but are carriers of the disorder. When a mother and father both have the sickle cell trait there is a 25 percent chance that their child will have sickle cell disease.

It is estimated that more than 4,000 Virginian's are living with Sickle Cell Disease. Sickle Cell Disease causes red blood cells to function abnormally, becoming rigid and curving into a sickle-like shape. The sickle shape makes it difficult for the cells to pass through tiny blood vessels, resulting in painful blockages that prevent vital oxygen and nutrients in the blood from reaching organs and tissues. These blockages can result in tissue damage, severe recurrent pain, strokes, organ damage and other serious medical complications.

There is no universal cure for sickle cell disease, but new treatments and preventive therapies have improved the life expectancy and quality of life for people with the disorder.

Sickle Cell Awareness Month began in 1975 when the Sickle Cell Disease Association of America, Inc. and its member organizations began holding events throughout the month to address the needs of the community locally and nationally. September officially became National Sickle Cell Awareness Month when the U.S. House of Representatives passed a resolution introduced by the Congressional Black Caucus in 1983. Since its official recognition, the month has been dedicated to events that raise awareness and understanding about the disease.

The state health department's Sickle Cell Anemia Programs provide information about the disorder to the public and health care professionals and offers screening, referral, counseling and follow-up services to Virginians at risk for sickle cell disease.

A Sista Gurl Living With Sickle Cell Anemia

Thursday, September 10, 2009

How do you manage life with sickle cell disease?

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