Intrioduction

Sickle cell disease is a common inherited disorder of red blood cells. In the United States, it is more common among African Americans. Sickle cell disease is also common in other racial / ethnic groups in the United States and around the world. The map on the next page shows the areas of the world.

Most children with sickle cell disease feel and look fine most of the time. When they do have medical problems, they can become sick very quickly and with little warning. For this reason, the State Department of Health and Senior Services now tests all newborns in New Jersey for sickle cell disease. Identifying infants with sickle cell disease in the first weeks of life can help prevent some of the serious medical problems of the disease.

Most of the medical care of children with sickle cell disease, involves treating or preventing problems as they occur. To make specialty care available to more children, the Department of Health and Senior Services has established sickle cell treatment centers throughout New Jersey. Each center has a team of specialists who work with the child's regular doctor. Together, they help the family manage the child's health care needs.

One of the most important aspects of caring for these children is educating families about the disease. Reading about all of the problems may, however, be scary. Just remember that most of these problems will probably never affect your child! If you are not aware of what might happen, you may not recognize the problems soon enough. The sooner you notice a problem, the sooner your child can get the treatment he/she needs.

Over the years, we have found that most families ask the same types of questions about the disease. This section includes some of these commonly asked questions. The answers and entire guide have been written at a level for older children and adults to understand. If you want a more detailed answer or you have other questions, ask the health care team at the treatment center.

Information about sickle cell disease is also available on the Internet.