Additional Resources: For Parents & Patients

Legacy: The Hemophilia of Yesterday

Matt Barkdull, 2015
Available from Amazon.com

A compilation of the published journals of Ralph Rytting between 1942 and 1944, at the height of World War II. Rytting was diagnosed with hemophilia at age 16 in 1943, when there was no treatment except whole blood transfusions. The exquisitely written journal entries illustrate Rytting’s sufferings, his perspectives of a war-torn world, his unwavering patriotism, and his brilliant mind, but also his desire to persevere, love, dream, have a family, and make a difference. Legacy has historical significance as possibly the earliest journal by a person with hemophilia.

You may download a copy of the book here.

Bleeder

Shelby Smoak
Michigan State University Press;
Available from Amazon.com

A coming-of-age memoir, Bleeder is the autobiography of Shelby Smoak, who has hemophilia and HIV. The diagnosis of HIV led Smoak to see his world from an entirely new perspective, one in which life-threatening illness was perpetually just around the corner. Set in the 1990s along the North Carolina coast.

Hemophilia

Michelle Raabe
2008
Available from Amazon.com

Scientifically detailed, colorfully illustrated, easy-to-read book focusing on the science behind the treatment, symptoms and genetics of hemophilia. Includes stories of hemophilia’s history; explanation of how various treatments are made, such as plasma-derived and recombinant; and how gene therapy might work

The Gift of Experience: Conversations About Hemophilia

Laura Gray, LICSW, and Christine Chamberlain, 2007
Boston Hemophilia Center
Free from NHF
Available from Amazon.com

Compilation of personal stories from transcripts of 21 hemophilia patients, 40 and older, who are treated at BHC. Includes quotes from doctors, nurses, and a social worker who cared for patients for 40 years. Describes life with hemophilia during HIV and hepatitis C infections. Offers insightful testaments to optimism, determination, resilience.

The Gift of Experience II: Conversations with Parents About Hemophilia

Laura Gray, LICSW, Ziva Mann, Allie Boutin, 2014
Boston Hemophilia Center
Free from NHF
Available from 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.

Dying in Vein

Kathy Steward MacKay and Stacy Milbouer
Hollis Publishing Company, 2004
kmackay@aol.com
$20

Stirring photojournal of individuals and families with hemophilia affected by HIV and hepatitis. Portrays people who suffer, who become advocates, and who mourn loved ones.

Survivor: One Man’s Battle with HIV, Hemophilia, and Hepatitis C

Vaughn Ripley, 2010
Available from Amazon.com

Story of courage about being diagnosed with HIV: how Ripley turned his life around to become a professional database administrator, and how medical advances allowed him and his wife to become parents.

Vial023: A Father’s Pursuit of Justice

Gary William Cross, 2012
Available from Amazon.com

In this memoir, Cross recalls his pivotal role in the nation’s “hemophilia HIV pandemic”: his 17-year-old son Brad died in 1993 after becoming infected with HIV as a child through contaminated clotting factor.