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Four Books About Hemophilia You Should Read

Posted on September 10, 2019

Thousands of members of MyHemophiliaTeam connect with one another and read each other's stories to gain perspective and validation about living with hemophilia. Another way to discover how to live better with a bleeding disorder is through books written by people who have this condition. We combed through member book recommendations and collected a list of the most popular.

1. The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress by Stephen Pemberton
In the '70s, hemophilia became perceived less of a mystery malady and more like a manageable medical condition. However, improper medical treatment led to an HIV and Hepatitis C epidemic in the hemophiliac community. This historical analysis of hemophilia is a fascinating read for those looking to better understand the condition.

2. Living with Haemophilia by Peter Jones
In 1974, this informational book made the world realize that with the correct information, you can live a complete and active life with hemophilia. The newest edition of Living with Haemophilia incorporates everything you need to know about living with the condition in an engaging format.

3. Survivor: One Man's Battle with HIV, Hemophilia, and Hepatitis C by Vaughn Ripley
In 1987, Vaughn Ripley is transfused with HIV and Hepatitis C positive blood and suddenly must live life with three serious conditions. Drug and alcohol abuse are soon to follow, but after many near-death experiences, he realizes what he must do to survive.

4. Legacy: The Hemophilia of Yesterday by Matthew Barkdull
What was it like to live with hemophilia before people knew what hemophilia was? Legacy is the diary of a pre-World War II teenager dealing with a mystery ailment while trying to live a complete life.

Check out some book recommendations and favorites from members of MyHemophiliaTeam:

"When people ask me if there are any books I would recommend, I say 'Lest We Forget' should be required reading for health care professionals on how to best serve the very people they are there to help."

"I have compiled a list of books written by people with hemophilia or their relatives. If I have missed any other similar books (in any language), please let me know."

"Other than that not been doing much, except reading."

What book about hemophilia do wish you knew about when you were first diagnosed?
Share in the comments below!

A MyHemophiliaTeam Member said:

I asked that when my son was born w/ Severe type A. He received port surgery when he was 3. B4 that, it was down to the hospital 3x a week for… read more

posted 28 days ago

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