Attachment C. Sources of Patient Education Materials A Brighter Heritage (Video, 17 min) Chronic Illness in the Classroom (Video, 15 min) Mississippi State Department of Health Genetics Division P.O. Box 1700 Jackson, MS 39215 Phone: 601-960-7619 The Infant and Young Child with Sickle Cell Anemia (a guide for parents, in English and Spanish) Pneumococcal Infection and Penicillin So Your Baby Has the Sickle Cell Trait (Spanish and English) Also available: brochures on sickle cell trait, sickle beta-thalassemia, hemoglobin C disease, pain in children, and various complications Sickle Cell Anemia, (Medicine for the Public) (NIH Pub. No. 90-3058) Sickle Cell: A Selected Resource Bibliography (Cat. No. D002) National Maternal and Child Health Clearinghouse A Parent's Handbook for Sickle Cell Disease (Birth to age 6) Education Programs Associates 1 West Campbell Ave, Building D Campbell, CA 95008 Phone: 408-374-1210 The Family Connection-Sickle Cell Trait (English, French, Spanish) Sickle Cell Trait-Sickle Cell Anemia: There is Quite a Difference California State Department of Health Childrens Medical Services Branch Help (resource book listing sources of care for patients with sickle cell disease in the United States, Puerto Rico and the Virgin Islands) Sickle Cell Disease—how to help your child to take it in stride A Parent/Teacher Guide Viewpoints Also available: Brochures on recent advances, newsletter on chapter activities, fact sheets, and brochures on sickle cell trait, anemia, and other topics, home study kit, games, and a video on parenting. National Association for Sickle Cell Disease 3345 Wilshire Blvd, Suite 1106 Los Angeles, CA 90010-1880 Thalassemia Information Sheet Phone: 800-421-8453 Sickle Cell Anemia Public Health Information Sheet March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue White Plains, NY 10605 Brochure for Parents of Children with Sickle Cell Disease Howard University Comprehensive Sickle Cell Center 2121 Georgia Ave Washington DC 20059 Phone: 202-806-7930 Note: The above listings are not all inclusive. Additional material may be available from your own State or local health department, sickle cell agency, or community agency. Index A Acronyms, 67 Acute Chest Syndrome (ACS), 43 prevalence of hemoglobinopathies in, prevalence of sickle cell disease in, 1, sickle cell trait in, 4, 15 American Academy of Family American Academy of Pediatrics, 45 Asians, 14-16 Asplenia, 9 B Benzathine penicillin, 40-41. See also Beta-thalassemia trait, 69. See also Sickle beta-thalassemia disorders collection methods for, 23-24 C Caucasians false positive tests in, 30-31 prevalence of sickle cell disease in, prevalence of sickle cell trait in, 15 as acceptable method, 35 detection of Hb A by, 22 results of repeated testing using, sensitivity in studies using, 26-27 as acceptable method, 35 detection of Hb A by, 25 results of repeated testing using, sensitivity in studies using, 26-27 Compound heterozygote, 69 Consensus Development Conference on Education. See also Counseling as element of medical management, instructional techniques for, 48 parent participation in, 4, 46 pre- and post-testing during, 48-49 regarding sickle cell trait, 8, 47, 49, sources of materials for, 90-92 Electrophoresis. See also Cellulose acetate electrophoresis; Citrate agar as acceptable method, 35, 84 description of, 21, 22 liquid blood samples for, 23 F Fever, 42, 44-45, 85 Filter paper samples, 23-24, 84 FS patterns definitive diagnosis and, 38 reporting of, 31, 32 FSA patterns interpretation of, 25 reporting of, 31, 32 FSC patterns, 31, 32 Genotype, 69 H Haemophilus influenzae predisposition of infant for, 8 explanation of, 69 detection of, 25 in individuals with sickle cell trait, 2, Hemoglobin A2, 3, 33, 38 Hemoglobin AC, 69. See also Hemoglobin C trait Hemoglobin AS. See Sickle cell trait Hemoglobin C disease, 21 Hemoglobin C trait, 21, 69 Hemoglobin D, 69 Hemoglobin E, 69 Hemoglobin E disease, 21 Hemoglobin E trait, 21 explanation of, 21, 39, 69 explanation of, 7 in individuals with sickle cell trait, 8, prevalence of, 11 production of, 1 screening for, 11, 21, 23, 50-51. See Hemoglobin S B-thalassemia disorders. disorders Hemoglobin S-D Punjab, 21 G Hemoglobin S/Lepore, 21 Genetic counseling. See Counseling Hemoglobin S/O Arab 7, 21 |