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Sickle cell disease is an inherited blood disorder affecting red blood cells. Normal red blood cells contain hemoglobin A. People with sickle cell disease have red blood cells containing mostly hemoglobin S, an abnormal type of hemoglobin. These red blood cells become sickle-shaped (crescent-shaped), and have difficulty passing through small blood vessels. There are several different types of sickle cell disease; the most common types are homozygous sickle cell disease (SS disease), and sickle-cell beta thalassemia (Sß+ or Sß0 disease).
How common is sickle cell disease?
Who gets sickle cell disease?
What are the symptoms of sickle cell disease?
How do people get sickle cell disease?
Important facts about sickle cell disease
How can I prevent complications of sickle cell disease?
Where can I find additional resources about sickle cell disease?
If you live in Maryland and are affected by sickle cell disease
Sickle cell disease is one of the most common diseases in the world, with approximately 300,000 babies being born each year with some form of the disease. Sickle cell disease is the most common disease detected by newborn screening efforts in the United States, as between 1 out of every 2500 and 1 out of every 2000 babies born in the U.S. has some form of the disease. Overall, it is estimated that approximately 100,000 persons in the U.S. are living with sickle cell disease.
Sickle cell disease can affect persons of any racial or ethnic background. In the U.S., African-Americans are most likely to have the disease, though it is found among many different racial and ethnic groups, including whites, Hispanics, Native Americans, and Southeast Asians.
Sickle cell disease causes a number of health complications for the affected individual. Persons with sickle cell disease are more susceptible to infections and strokes. Sickle cell disease can cause progressive organ damage throughout the body, including the lungs, kidneys, and joints. Some people with sickle cell disease may develop neurocognitive deficits. The hallmark symptoms of the disease, however, are the episodes of severe acute pain, called vaso-occlusive crises (or sickle cell crises), that the individual can experience. These pain episodes can affect any part of the body. These episodes can be as short as a few hours in length, or they may last for days on end. In addition to this severe, acute pain, the disease is the source of chronic pain as well (in the hips, back, or other joints, for example). Sickle cell disease can cause early mortality, and even though people with the disease are living longer, it is estimated that persons with the most severe form of the disease (sickle cell anemia) have a median life expectancy approaching 50 years.
With the necessary support, people with sickle cell disease should be able to lead normal lives.
There is no way to always prevent sickling and sickle cell crises. Here are some gneeral ideas that may help:
More specific recommendations to reduce the number of sickle cell crises an affected person may experience include taking the following precautions:
The Sickle Cell Association of America advocates for the needs of persons with sickle cell disease. They have member organizations all across the U.S. Please see their website for more information: http://www.sicklecelldisease.org
The Sickle Cell Information Center based in Atlanta, Georgia provides a wealth of news, information, and links to resources about sickle cell disease. Please see their website at: http://www.scinfo.org
The National Heart, Lung, and Blood Institute of the National Institutes of Health is one of the federal organizations that oversees research related to sickle cell disease. See their website for news, education, and other information about the disease: http://www.nhlbi.nih.gov/new/sicklecell.htm
A number of community-based organizations exist in Maryland that seek to provide education, information, and support for persons and families affected by sickle cell idsease. See the below links for more information: