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Raising a Child With Hemophilia: A Practical Guide for Parents |
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Kelley, Laureen A., 2007 The fourth edition of the world’s first parenting book about hemophilia written by a parent of a child with hemophilia. Provides practical and easy-to-understand information on medical treatment, genetic transmission, child development stages, consumer issues, school and sports. Includes stories and advice from experienced parents, compiled from interviews with more than 180 families. |
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Raising a Child With Hemophilia in Latin America |
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Download English Version |
Kelley, Laureen A. with Narváez, Ana L., 2006 The first book about hemophilia in Latin America. Based on interviews with dozens of families and patients in at least five countries, and written from parents’ point of view. Topics include differences in hemophilia treatment, genetics transmission, family dynamics, government policies, being a smart consumer, and medical complications. Covers the widely diverse areas of Latin America. Guidebook teaches parents to become competent, effective and proactive. Written by a parent of a child with hemophilia. |
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Success as a Hemophilia Leader |
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Kelley, Laureen A.,
2004
The world’s first guidebook to creating, managing and growing a grassroots hemophilia organization. Explores creating a vision and mission, forming a board, fundraising, producing a newsletter, programming, establishing an office, and working with a medical advisory board. Offers valuable advice on creating an organization or improving an existing one. Sponsored by |
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Teach Your Child About Hemophilia |
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Kelley, Laureen A., 2006 In-depth exploration of the way children think and how they understand hemophilia as they mature. Examines children’s understanding of hemophilia concepts at different ages: cuts, healing, blood, severity levels, blood clotting, infusions and genetic transmission. Provides fascinating look at the way children on prophylaxis understand hemophilia. Offers practical tips for answering children’s questions about hemophilia. Prepares parents to appropriately answer children’s questions and encourage independence. |
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A Guide to Living With von Willebrand Disease |
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Paper, Renée, R.N., with Kelley, Laureen A., 2006 The world’s first book on the world’s most commonly inherited bleeding disorder. Covers learning to cope with VWD, inheritance, the medical system, treatment, women’s issues and health insurance. Includes a complete resource guide and real-life stories. |
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Empower Yourself About Hemophilia |
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Kelley, Laureen A., 2004 For families of children newly diagnosed with hemophilia. Includes goal-setting methods, and ways to change your perception of hemophilia to take charge of your life. Cartoon illustrations of “before” and “after” situations offer concrete methods of regaining control during the rocky first year of hemophilia. |
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A Consumer's Guide Hemophilia and von Willebrand Disease Products |
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2004 Sponsored by Factor Support Network Comparative guide to all factor concentrate and specialty products for the bleeding disorders community; concisely examines all relevant information for consumers. Factor VIII, factor IX, factor IX complex and inhibitor products are color-coded and easy to cross-reference. Binder can also be used as a stand for flip-chart style teaching. |
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Legacy: The Hemophilia of Yesterday |
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Barkdull, Matthew Dean, 2006 Sponsored by and available through A teen with a passion for writing begins a journal in 1942, during World War II. What mysterious illness plagues him? The wartime journal of Ralph Dean Rytting is quite possibly the earliest published personal account of hemophilia in the world. Eloquent yet simple, these intimate recollections reveal a stoic teen whose suffering deepened his appreciation for all tender mercies in his life. |
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Books for Children |
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What is Hemophilia? (Series) |
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Kelley, Laureen A.,
1995 Sponsored by CSL Behring Developmentally arranged series explaining hemophilia to children using language and concepts appropriate for three age levels: preschool, school-age, adolescent. Each book covers the same topics in educationally and cognitively different ways. Contains “Note to Parents” for each age level. For parents and children. |
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Level 1: Joshua, Knight of the Red Snake Empowering story about preschooler with hemophilia. Illustrated large-text format. Ends on a note of joy and confidence to empower children. Ages 3 to 7. |
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Level 2: They'll Probably Ask You "What is Hemophilia?" A humorous story about Tony, who must explain hemophilia to his fourth grade classmates. Includes glossary for children. Ages 7 to 11. |
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Level 3: Tell Them the Facts! Question-and-answer book on hemophilia for pre-adolescents and adolescents. Material on genetics divided into two sections: ages 11 to 14, and 14 to 16. Also for teachers and parents of newly diagnosed children. Includes glossary. |
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Must You Always Be a Boy? |
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Kelley, Laureen A.,
1991
Sponsored by CSL Behring Four rhyming tales explore adult reactions to bleeds, overprotective parents, sibling rivalry and classroom bullies. Illustrated. Ages 3 to 8. |
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Alexis: The Prince Who Had Hemophilia |
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Kelley, Laureen A.,
1992
Sponsored by CSL Behring True story of Alexis, youngest child of Russian Tsar Nicholas II, and how his hemophilia influenced events ultimately leading to the Russian revolution. Ages 8 and older. |
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Hemophilia Logic |
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Horbacz, Diane,
2005
Sherlock Bones guides children through this activity book about hemophilia, body functions, independence, treatment and self-esteem with colorful mazes, matching, glyphs, games and puzzles. Ages 7 to 13. |
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Factor Fun! |
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Horbacz, Diane,
2006 Activity book teaches about hemophilia and self-esteem with colorful mazes, matching, glyphs and counting. Illustrated. Each activity arranged by color-coded topic. Ages 4 to 7. |
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