7 Must-Read Books for Newly Diagnosed Patients and Their Families

A roundup of helpful books about hemophilia and other bleeding disorders

If you or someone you love is diagnosed with a bleeding disorder, one of the best first steps you can take is to educate yourself about the condition and gather as much information as you can. These books can help you do just that:

 

For Adults:

Raising a Child With Hemophilia: A Practical Guide for Parents
Fifth edition of the first parenting book on hemophilia written by a parent of a child with hemophilia. Practical, easy-to-understand information on medical treatment, genetic transmission, child development, consumer issues, school, sports. Includes stories and advice from experienced parents, compiled from interviews with more than 180 families.

Caring for Your Child with Hemophilia
This booklet from NHF answers common questions about symptoms and treatments and offers advice about practical measures to guide and protect your growing child.

Hemophilia
Covers the science of hemophilia, the evolution of treatment, and advice on how to live a full and productive life with a bleeding disorder.

The Gift of Experience II: Conversations with Parents About Hemophilia
A helpful resource for families of newly diagnosed children, the book is a compilation of interviews with parents who share their experiences raising their children from birth to age 6.

100 Questions & Answers About von Willebrand Disease
Practical, easy to understand answers to questions that are most relevant to those recently diagnosed with VWD.

 

For Children:

I Am Nate
Designed for preschoolers still learning the basics of their hemophilia.

The Great Inhibinator
A picture book to help parents and children living with hemophilia and an inhibitor discuss and cope with their feelings.