A doctor who wrestles with the guilt of infecting patients with HIV, and a survivor who overcame his anger to compete in triathlons are among those who recently published inspirational and informative stories about living with hemophilia. Here are five books that shed light on the history of bleeding disorders, treatment options and the search for a more fulfilled life.
Doctor Guilt? By Everett Winslow Lovrien (iUniverse, 2011)
This is the gripping personal account of hematologist Everett Winslow Lovrien, who headed the hemophilia treatment center at Oregon Health Sciences University in Portland, Oregon. During the 1980s, he prescribed his patients new blood factor concentrates. The seemingly miraculous remedy allowed patients to lead more normal lives without significant pain and suffering. But the concentrate was contaminated with HIV and hepatitis and caused liver failure and AIDS, killing 98 of Lovrien’s patients. Doctor Guilt blends medical intrigue, corporate greed, tragedy and Lovrien’s enduring question—Is the doctor simply guilty?
The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress. By Stephen Pemberton, PhD (The Johns Hopkins University Press, 2011)
Stephen Pemberton explains how the scientific community developed an understanding of blood disease management for hemophilia in the 1970s and set out to create technologically advanced interventions to combat it. However, rather than healing, the social and cultural desire to “normalize” hemophilia patients and the political pressure to promote scientific advancements had deadly consequences for those who were infused with HIV-infected factor concentrate. Pemberton, associate professor at the Federated Department of History at the New Jersey Institute of Technology in Newark, New Jersey, uses historical perspective to reveal the irony and flaws in this process to prevent patients, doctors, scientists, society and the government from making the same mistakes again.
Survivor: One Man’s Battle With HIV, Hemophilia, and Hepatitis C. By Vaughn Ripley (iUniverse, 2010)
Diagnosed with hemophilia as a child, Vaughn Ripley later received a contaminated blood transfusion that led to HIV and hepatitis C. His reaction to being told he’d been given a death sentence at age 19? Rage. Ripley turned to drugs, alcohol and risky decisions before getting clean and leading a successful life as a database administrator, triathlete, husband and, eventually, father. Survivor details Ripley’s misadventures, as well as his desire to live and fight against his ailments. He takes the reader on a heartbreaking, funny, tragic and inspiring ride.
Managing Your Child’s Inhibitor. By Laureen A. Kelley (LA Kelley Communications, 2010)
With an immune system that works overtime to fight off clotting factors, children with inhibitors have a tougher battle against bleeding than other kids with hemophilia. These special patients are the focus of Laureen A. Kelley’s book, as she tries to help parents better manage their child’s disease. By sharing other families’ stories, detailing risk factors, providing treatment options (including those on the horizon) and offering tips for everyday living, Kelley offers a comprehensive guide to educate parents caring for children with this challenging complication.
Find the book online.
The Cure for the Chronic Life. By Pastor Shane Stanford and Deanna Favre (Abingdon Press, 2010)
Pastor Shane Stanford and Deanna Favre, wife of retired NFL quarterback Brett Favre, joined forces to produce a book about overcoming chronic illness and leading a fulfilling, spiritual life. Stanford, senior pastor at Christ United Methodist Church in Memphis, Tennessee, has mild hemophilia A, HIV and hepatitis C; Favre is a breast cancer survivor. The book describes a 40-day treatment plan that focuses on compassion, understanding, response and encouragement.