Sickle Cell Anemia Resources for Parents

Resources abound for parents of children with sickle cell anemia, an inherited blood disorder that affects 70,000 to 100,000 people in the U.S., according to the American Society of Hematology This disease involves the creation of abnormal hemoglobin in red blood cells, which distribute oxygen throughout the body. Sickle cell anemia red blood cells are C shaped and clog blood vessels, causing pain, infections, organ damage and other complications. Several hospitals and other organizations provide access to the latest research, support groups, financial help and disease information that can make managing the disease easier for parents with children of have sickle cell anemia.

  1. Children's Cancer and Blood Foundation

    • The website of the Children̵7;s Cancer and Blood Foundation provides parents with multiple resources to learn more about the disease and how to provide proper care for children who have it. Created in 1952, the CCBF is the oldest and largest U.S. charitable organization focused on childhood cancers and blood disorders, according to the organization̵7;s website. The foundation supports the Division of Pediatric Hematology and Oncology, which provides comprehensive care to children with sickle cell disease. The CCBF does not turn children away because of inability to pay for services.

    Organizations

    • Information on clinical trials for sickle cell anemia is available through the American Society of Hematology. These trials might include new drugs, bone marrow and stem cell transplants. ̶0;Hematology, the ASH Education Program Book̶1; provides articles on current treatment options, and ̶0;Blood,̶1; the ASH̵7;s official journal, also provides access to recent research on the disease. If you don̵7;t want to subscribe to ̶0;Blood,̶1; you can request a copy of a particular article by emailing the journal̵7;s publishing office. The Sickle Cell Disease Association of America website offers a host of information for parents, including community sickle cell disease support groups. The organization also provides a page with multiple resources for parents and patients. The American Sickle Cell Anemia Association is based out of Ohio, but it provides information and support to families in all 50 states.

    Educational and Support Sites

    • The Genetics Home Reference website of the National Institutes of Health provides a wealth of information on sickle cell anemia. It also has a page of specific resources for patients and families. These sites can help parents understand the disease better and find current research on treatment options. In addition to information on the disease and links to research, the Genetic and Rare Diseases Information Center of the National Institutes of Health allows the public to submit questions about the disease. The center will then try to answer them and post the question and answer on its website. Parents can also scroll through previous questions other users have submitted. Additionally, Harvard University̵7;s Sickle Cell Disease page offers an overview of the condition and research on disease management.

    Sickle Cell Kids

    • A website designed just for kids with sickle cell disease called Sickle Cell Kids helps them understand their condition and how to manage it. It includes games and interactive material that are kid friendly. Sickle Cell Kids can help parents explain the disease to their children in a way that is entertaining and informative.

    Other Resources

    • The Children̵7;s Hospital Boston provides a concise fact sheet for parents to give to school nurses and other school personnel on their children̵7;s sickle cell disease. The Centers for Disease Control and Prevention provides a 52-page state-by-state directory of resources related to sickle cell disease. The Connecticut Children̵7;s Medical Center website provides helpful ideas for parents on how to care for their child with sickle cell disease and provides an easy-to-read overview of the disease. In addition, the Texas Department of State Health Services provides a helpful guide for parents of school-age children with sickle cell anemia.

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