The bleeding disorders community has changed dramatically over the past several decades. Advanced treatments mean people now live significantly improved lives compared with their forebears, who struggled mightily with complications. But the advances enjoyed today are built on the past efforts and sacrifices of countless community members. The tainted blood products crisis of the late 1980s and early 1990s, which led to thousands of people with hemophilia becoming infected with HIV and hepatitis C, cannot be forgotten. This crisis and other challenges pushed the community to action and helped bring about the safer treatments of today. Below are five books that will help readers understand the past, better appreciate the present and inspire them to safeguard the future.
Nicholas and Alexandra: The Classic Account of the Fall of the Romanov Dynasty
by Robert K. Massie
Although this book by Pulitzer Prize-winning author and historian Massie isn’t technically about bleeding disorders, hemophilia looms large because Russian Czar Nicholas and Empress Alexandra’s only son, Alexis, had hemophilia. Alexis inherited the condition from his mother, one of Queen Victoria of Britain’s granddaughters. (Victoria, a hemophilia carrier, had five daughters who married into families across Europe, thus spreading the hemophilia gene throughout European royalty.) In Russia, Nicholas and Alexandra engaged the mystic Grigori Rasputin to treat Alexis, a controversial and widely denounced decision that undermined the family’s authority and gave fuel to the Russian Revolution of 1917 that overthrew the Romanovs. Massie’s interest in the Romanovs was piqued after his son was born with hemophilia. For anyone curious about why hemophilia has historically been referred to as the “royal disease” and what it was like to live with the condition at the turn of the 20th century (albeit as a prince), Massie’s book is a must-read.
Legacy: The Hemophilia of Yesterday
by Matthew Dean Barkdull
Legacy is a collection of diary entries from 1942 to 1944 by a rural Idaho teen named Ralph Dean Rytting, who was diagnosed with hemophilia in 1943 at age 16. Edited by Rytting’s grandson, Matthew Barkdull (who also has hemophilia), it’s a fascinating window into hemophilia at a time when diagnosis and treatment were very difficult and people with the condition weren’t expected to live long (Rytting died in 1971 at 44). He recounts painful, debilitating bleeds but also lighter moments from his teen years. Overall, Legacy is suffused with hope and resilience, enduring qualities of so many people with bleeding disorders and their caregivers.
Blood Saga: Hemophilia, AIDS, and the Survival of a Community
by Susan Resnik
Published in 1999, Blood Saga chronicles key moments in the 20th century that affected the hemophilia community, such as Stanford researcher Judith Graham Pool’s discovery of cryoprecipitate in 1965. But as the book’s subtitle suggests, its focus is largely on the 1980s-era HIV/AIDS and hepatitis C crisis. In a review, the New England Journal of Medicine described the book as “a fascinating page turner about one of medicine’s darkest periods.” But perhaps the most important takeaway from Blood Saga is how, in the face of such a dark period, the bleeding disorders community refocused and worked together to enact safeguards that to this day protect everyone—not just people with bleeding disorders.
Ryan White: My Own Story
by Ryan White and Ann Marie Cunningham
In 1984 at age 13, Ryan White became one of the first children with hemophilia to be diagnosed with HIV/AIDS after becoming infected from a tainted blood transfusion. Suitable for readers young and old, White’s autobiography was published in 1991, a year after he died of AIDS at age 18. In the book, White describes how he got HIV, recounts the ferocious legal battles he and his mother, Jeanne White-Ginder, fought so he could return to school, and how his family moved away from his hometown because of prejudice. Despite his youth, White became a national spokesman and passionate advocate for HIV/AIDS education and hemophilia awareness. The National Hemophilia Foundation honors his legacy through the annual Ryan White Youth Award, given to a young person who has educated others and increased awareness and understanding of bleeding disorders.
Cry Bloody Murder: Remembrance & Healing
by Elaine DePrince
Today, Elaine DePrince is probably best known as the mother of ballerina Michaela DePrince, but she’s been a devoted bleeding disorders activist for decades. Cry Bloody Murder recalls the terrible toll of the 1980s tainted blood products crisis from the caregiver’s point of view. Elaine DePrince’s three youngest sons with hemophilia all died of AIDS after being infected with HIV from treatment products (her two older sons have von Willebrand disease, as does DePrince herself). She wrote Cry Bloody Murder because “it makes me feel there’s meaning to my children’s deaths,” she said in 1997, the year the book was originally published. Despite her tremendous personal loss, DePrince writes how she was driven to understand why her sons died and to seek justice for them and other families who endured similar tragedies. DePrince published an updated version of Cry Bloody Murder in 2017, in which she discusses her family’s experiences since her sons’ deaths.
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See also:
• 5 Films That Capture the History of the Bleeding Disorders Community
• Bleeding Disorder Books Educate, Inform and Inspire
• 7 Must-Read Books for Newly Diagnosed Patients and Their Families