Additional Resources: For Parents & Patients
Dear Hemophilia: Finding Hope Through Chronic Illness
Cazandra Campos-MacDonald 2019
Available from Amazon.com
Tender, passionate, often humorous story told in letters written to hemophilia, as if the disorder were a person. Throughout her journey to handle first one son’s and then another’s diagnosis, treatment, and new way of life, the author leans on self-discovery, a great medical community, a supportive husband, her resilient children, and most of all, her faith.
The Gift of Experience II: Conversations with Parents About Hemophilia
Laura Gray, LICSW, Ziva Mann, and Allie Boutin
Boston Hemophilia Center 2014
amazon.com
Compilation of personal stories from parents and caregivers of hemophilia patients; offers insights into the daily life of raising a child with hemophilia.
Legacy: The Hemophilia of Yesterday
Matt Barkdull 2014
amazon.com
First published diaries of hemophilia, the true story
of a teenager with a passion for writing in a western farming community before World War II. He records his hopes, dreams of independence and romance, suffers excruciating pain, yet expresses profound faith.
