Hemophilia Library

Books About Living with Hemophilia:

1. Kelley, Laureen Raising a Child With Hemophilia: A Practical Guide for Parents
   Edition 4, September, 2007
   This is an excellent book written by a parent, for parents, with other parent comments, opinions, and advice. This is a great book for newly diagnosed parents.
2. Kelley, Laureen Empower Yourself About Hemophilia: How to be more effective and less victimized
   This is a great book to help parents adjust to the diagnosis of hemophilia. How to avoid victimization, set new goals, identify feelings, and accept responsibility.
3. Paper, Renee, R.N. with Kelley, Laureen A Guide to Living with von Willebrand Disease 2006
   The world’s first book on the world’s most commonly inherited bleeding disorder. Covers learning to cope with vWd inheritance.
4. Kelley, Laureen Teach Your Child About Hemophilia
   This new book, formerly known as "My Blood Doesn’t Have Muscles" is about teaching hemophilia in a developmentally appropriate manner. Based on interviews with 100 hemophilia patients, ages 3-18
5. Kelley, Laureen Tell Them the Facts 1995
   A question and answer book on hemophilia for pre-adolescents and adolescents.
6. Kelley, Laureen Alexis: The Prince Who Had Hemophilia 1992
   The true story of Alexis, the youngest child of Russian Tsar Nicholas II and how his hemophilia influenced events ultimately leading to the Russian Revolution. Ages 8 and up.
7. Kelley, Laureen Hemophilia: It’s Logical! 1995
   This booklet contains visual and word puzzles and games for children with Hemophilia. It is recommended for ages seven and older.
8. Kelley, Laureen Must You Always be a Boy? 1991
   Four fun and entertaining fictional stories about how a child (or cute monster) deals with having hemophilia. It is recommended for ages five to ten.
9. Kelley, Laureen They Will Probably Ask You... "What is Hemophilia?" (2001)
   This book is a child’s perspective about what hemophilia is and how to tell someone who may not know anything about bleeding disorders. It is fun and interesting for ages seven to eleven.
10. Kelley, Laureen Joshua: The Knight of the Red Snake (2001)
    Joshua is a typical young boy who loves to play pretend with his friends. But when he falls and hurts his knee, he shows his friends the real world of treating a bleed. This book is entertaining for young children aged three to seven.

    Booklets and Brochures from The National Hemophilia Foundation

11. National Hemophilia Foundation for all Bleeding Disorders (1998)
    A brief overview about when NHF was founded. Information about research, education, and advocacy within the foundation is laid out in this pamphlet. If a person wants more information regarding this group, there is a form to fill out.
12. Fast Facts (the following are a series of brochures by the National Hemophilia Foundation)
    Frequently Asked Questions About Hemophilia
    Inheritance of Hemophilia Fact Sheet
13. Caring for your Child with Hemophilia
    This thirty one page booklet is written to give an overview of hemophilia, treatments, common bleeds and injuries, as well as, tips for babies and toddlers with hemophilia. There are sections about nutrition and dental care that is helpful also.

    Von Willebrand Disease (VWD)

14. Von Willebrand Disease: Just the FAQs (2000)
    This is a booklet that is in question and answer format. There are frequently asked questions which are followed up with the correct general answer for von Willebrand disease.

    a) Nosebleeds
    Written by Marion A. Koerper, MD and members of NHF’s
    Nursing Working Group
    This brochure answers typical questions about nosebleeds, what to do about them and when to seek professional help.

    b) Stay Active… Stay Healthy: Important information for boys with von Willebrand disease
    CSL Behring, 2007

    c) Can We Talk?
    Von Willebrand disease, menstruation, and your daughter
    CSL Behring, 2007

    d) Stay Active… Stay Healthy: Important information for girls with von Willebrand disease

    e) Von Willebrand Disease: A Patients Guide to Understanding
    CSL Behring, 2007

    f) Von Willebrand Disease 2008 by Carol Kasper, MD
    Hemophilia Treatment Center, Orthopaedic Hospital
    2400 South Flower Street, Los Angeles, CA 90007

    A new study on the disease made possible by The CSL Behring Foundation for Research and Advancement of Patient Health

15. The Child With a Bleeding Disorder: First Aid for School Personnel
    Guidelines for treating specific bleeding episodes that may occur in school.
16. The Child With A Bleeding Disorder: Guidelines for Finding Childcare
    This pamphlet contains guidelines and general information about childcare options. It stresses the importance of knowing the kinds of care available and the specific needs of a child with a bleeding disorder.
17. Inherited Bleeding Disorders And Child Abuse Investigations (1998)
    This is a resource for day care and school personnel, healthcare workers, and emergency room providers. Many children are diagnosed with an inherited bleeding disorder after an investigation of suspected child abuse. This brochure gives information about hemophilia and Von Willebrand Disease.
18. A Guide for Women and Girls with Bleeding Disorders (1998) Written by Jill Williams
    This forty seven page booklet helps woman and girls who may have signs and symptoms of a bleeding disorder. There is information about bleeding disorders, and discussions about treatments and living with a bleeding disorder.
19. One Week is Enough (1998)
    This is a short booklet about women and girls who may have a period that lasts longer than one week. There is information about von Willebrand disease and how to look for further signs and symptoms.
20. Inheritance of Hemophilia (1998)
    This booklet is designed to teach people about the inheritance of hemophilia by giving a brief history and discussing the causes of hemophilia. There are helpful tables and graphs of Queen Victoria’s Family Tree and tables of chromosomes explaining how a gene is affected.
21. Physical Therapy in Bleeding Disorders (2000)
    This booklet answers the question, what does physical therapy have to do with bleeding disorders? There is great detail about how bleeding into joints and muscles can lead to significant disability. This booklet describes the physical therapy management of bleeding episodes and the different ways in which PT can help an individual with a bleeding disorder.
22. The Treatment of Hemophilia: Current Orthopedic Management (1996)
    This booklet is a very extensive and intensive study in orthopedic manifestations, explaining that the most common site of bleeding in a person with hemophilia is into the musculoskeletal system. Further explanation about how to treat the problems with bleeding into these areas is discussed.
23. Comprehensive Care for People with Hemophilia (1991)
    This booklet offers an explanation about why comprehensive care is needed. It goes on to explain what comprehensive care offers a person with hemophilia above and beyond traditional office-based doctor and nursing care. There are case histories to give more examples of how comprehensive care is best.
24. Inhibitors in Hemophilia: Current Perspectives and Future Directions (2001) edited by Dr. Amy Shapiro
    This book discusses the significant challenges faced by clinicians in the hemophilia community, inhibitors. Provides current knowledge in regard to inhibitor formation, risk factors, immune tolerance, induction, and alternative therapies to factor replacement.

    Living with HIV/AIDS and Hepatitis

25. Living with HIV: Talking with Your Child (1990) By Bobbie Steinhart, LCSW
    A Pamphlet directed at caregivers of young children living with hemophilia and HIV disease. (8 pages)
26. My Parents Have HIV/AIDS: Some Advice from an Eight-Year-Old (1994) By Stephanie and Kathy Gerus (available in Spanish)
    This is a very personal account of hemophilia and HIV/AIDS written and illustrated by a young girl for other young people. It explains HIV and AIDS in very easy-to-understand terms. For More Information on AIDS/HIV go to http://AIDSinfo.nih.gov
    And the AIDS info Information Service at 1-800-448-0440
27. Understanding Hepatitis (1996) by Leonard Seeff, MD and Maribel Johnson, RN Sponsored by The National Hemophilia Foundation
    This booklet is for people with bleeding disorders, their caregivers, and families, providing comprehensive information about viral hepatitis. This booklet covers the different hepatitis viruses, viral transmission, how the liver is affected, blood product concerns, prevention, diagnosis, treatment, and psychosocial issues.
28. Your Liver
    Sponsored by Hepatitis Foundation International
    This brochure discusses what the liver does, risk factors for liver disease, healthy lifestyle tips and more.
29. Take Care of Your Liver Sponsored by Hepatitis Foundation International
    This brochure teaches the many roles of the liver, and gives six concrete steps to take care of your liver.
30. Living with Hepatitis C: A Survivors Guide by G.T. Everson, MD and J. Weinberg Sponsored by Hepatitis Foundation International
    This hard cover book is an invaluable tool with new information on the latest treatments including Ribavirin with new chapters on hepatitis C and women and children with HIV. This book brings help and hope to those with the disease.
31. Liv and Lucky in Liverland (DVD) Sponsored by Hepatitis Foundation International
    This cartoon animation teaches kids from an early age how to take care of their liver.
32. The Invisible Threat (12 min. DVD) Sponsored by Hepatitis Foundation International
    This twelve minute DVD has information about effective prevention
    Education, a look into the development of health policies, and promoting healthy life styles.

    Games, Activities, DVD’s and Videos

33. A Long and Happy Life The Great Lakes Hemophilia Foundation
    Sponsored by The National Hemophilia Foundation, 2004
    This twenty minute video gives parents advice on how they can best prepare a child who has a bleeding disorder transitioning from childhood to adulthood. The advice from parents for parents is on a very personal level.
34. The Baxter Factor by Baxter Healthcare Corporation
    *Spanish version only available*
    This is a memory challenge card game for children ages 5 and up. The pictures on the cards have something to do with living with hemophilia.
35. Function of Recombinant FVIII at the Site of Bleeding By Bayer Healthcare and Kogenate FS
    This is a CD-Rom that explains how the “man-made” recombinant factor viii helps clot at the site of a bleeding episode. There are scientific facts and information for professionals and adults.
36. Joint Damage in Patients with Hemophilia A (2004) By Bayer Healthcare and Kogenate FS
    This handy notebook-style brochure explains in detail how a joint can be damaged, joint erosion, a joint bleed, and what a healthy joint looks like.
37. EZ Log Overview Video – CD-Rom (PC Format) By Bayer Healthcare and Kogenate FS
    Slide this CD into your computer and view a quick overview about using the EZ Log. The EZ Log is free to all patients who use Kogenate FS and helps the patient (or the parents) record infusions accurately and easily.

    Booklets and Brochures from World Federation of Hemophilia

38. What is Hemophilia? (booklet)
    An Introduction to Gene Therapy
39. Growing Up with Hemophilia: Four Articles on Childhood
40. Hepatitis C Infection and its Management
41. Inhibitors in Hemophilia: A Primer
42. Oral Care for People with Hemophilia or a Hereditary Bleeding Disorder
43. Protocols for the Treatment of Hemophilia and vonWillebrand Disease
44. The Pain Management Book for People with Hemophilia and Related Bleeding Disorders
45. Protocols for Dental Treatment of Patients with Inherited Bleeding Disorders
    For more information from the World Federation of Hemophilia go to: http://www.wfh.org/index.asp?lang=EN

    Additional Titles for Adults and Children

46. Bob the Puppet Goes to School By Wyeth, 2006
    This is a book about the puppet, Bob who goes to hemophilia camp and makes lots of friends, going for walks, and making arts and crafts. Inside the book are some fun activities that kids do at camp!
47. Bob the Puppet Takes a Trip By Wyeth, 2006
    Bob takes a trip with his family and some friends. He learns that planning and being prepared for a bleed is very important in his life.
48. Diane Dino’s Dilemma By Jane Shapiro
    This is a story about vonWillebrand Disease. Diane the dinosaur finds out about the basics of vonWillebrand disease and how to treat it.
49. Your Child’s Hemophilia (series by CSL Behring Choice Support Center, 2001)
    This three part series is for parents about what to expect during different phases of a child’s development. The series includes the titles, Your Child’s Hemophilia, What to Expect During Infancy, What to Expect During the School Age Years, and The Young Adult Years.
50. B2B Speaking from Experience (2006)
    The Coalition for Hemophilia B (www.coalitionforhemophiliab.org)
    This colorful booklet for adults and teens shares personal experiences of factor IX deficient patients. Developed using recommendations from Wyeth Consumer Advisory Board.
51. B2B Speaking from Experience: A Guide for Mature Adults (2007) The Coalition for Hemophilia B (www.coalitionforhemophiliab.org)
    This booklet is the latest installment in the B2B series which provides mature adults with helpful knowledge to make informed life decisions and remain healthy today and in the years ahead. Sponsored by Wyeth Pharmaceuticals.
52. Living with Hemophilia B (Wyeth Pharmaceuticals)
    This is a colorful, comprehensive overview of Hemophilia B. Topics include genetic transmission, carrier testing, treatment, resources, symptoms of bleeds, joint care, physical activities, and basic hemophilia as your child grows.
53. A Family Guide to Hemophilia B (2005)
    (CSL Behring Choice Support Center- cslbehring.com)
    This guide discusses unique challenges faced by families living with Hemophilia B, including treatments and recent advances.
54. I am Nate! By Chris Perretti Barnes
    Nate tells his own personal life story of what his life is like in preschool and at home. Everyday activities make Nate feel like a big kid, including helping his parents infuse him with factor.

    The following paperback books are a series of manuals for children and their families about the symptoms and treatment of Hemophilia. They are designed to help children understand their bleeding disorder in a unique way. They are written by Joanna A. Davis, MD and sponsored by Baxter Bioscience:

55. Understanding Hemophilia
56. Shoulders, Elbows, Knees, and Toes
57. My brother has Hemophilia
58. I Have Von WilleWhat?
59. I Can Do It Myself!
60. Everyone Can Learn Something
61. An Inhibitor? What’s That?
62. What’s Immune Tolerance?