SEATTLE, March 31 According to the National Hemophilia Foundation, about 1 in every 5,000 boys are born with hemophilia, a bleeding disorder that prevents the blood from clotting properly. There are approximately 400,000 people worldwide who are affected with this and nearly 70% of these people do not have access to treatment. Typically thought of as a "boy's disease," girls are rarely affected by this genetic condition. So what is a girl to do when she is diagnosed with a rare form of this deadly condition?
In Pooling Blood: A journey of two girls with hemophilia and their parents' struggle to keep them alive (published by iUniverse), Cheryl Nineff D'Ambrosio tells about the thirty-year struggle her family has endured and reveals disturbing flaws in the healthcare system where professionals all too often fail to hear the voices of the real experts -- the patients and their families.
When Cheryl first became involved with Tony, a widower, and his two young daughters, Teresa and Maria, she soon found out that they had been living a life that was full of terrifying situations. Both girls were born with a rare form of hemophilia, called severe factor V deficiency. Over the years, Cheryl documented Teresa and Maria's bleeding episodes, sometimes first-hand using her laptop computer -- with the hope that one day her observations might have a positive impact on the lives of other people with bleeding disorders.
"It is my goal to increase awareness of bleeding disorder treatment within the medical community and challenge the paradigm of diagnose first, treat later," explains Cheryl. "It is essential that every medical professional understand that people with bleeding disorders who have already been diagnosed by an established hemophilia treatment center need immediate treatment when having a bleeding episode in order to prevent these patients from entering into a death spiral; a bleed that will not stop. By increasing awareness and establishing a trust network between the patients, the parents and within the medical community we can not only help decrease hospital costs -- from running unnecessary tests -- but more importantly, decrease the risk to patients saving injury and lives."
Medical professionals reading Pooling Blood will gain an incredible amount of knowledge about hemophilia as they follow two female patients with severe hemophilia, over a period of thirty years -- understanding the cause/effect and the entire life cycle of numerous types of bleeding episodes. Their medical records told in story form, will truly help others learn about what it is like to have this disorder.
"The D'Ambrosio story portrays many of the trials and tribulations associated with raising two daughters with a bleeding disorder, highlighting the critical role of family support and advocacy," writes Dr. Arthur R. Thompson in the forward of Pooling Blood. Dr. Thompson is a leading authority on hemophilia who previously served as Director of the Puget Sound Blood Center Hemophilia Treatment Center. He participated in the resolution of some of the most severe bleeding episodes experienced by the girls, and detailed in Pooling Blood. "Their story underscores the importance of parents fostering personal competencies and self-efficacy for early recognition of bleeding problems and for obtaining prompt and effective treatment."
In 2009, Cheryl founded MyGirlsBlood, a nonprofit charity and social network dedicated to providing international awareness for girls and women with bleeding disorders. MyGirlsBlood now has nearly 90 ladies with various types of bleeding disorders, participating in its social network from the United States, New Zealand, Canada, India, Philippines and Sweden.
"Watching kids grow up takes years," writes Cheryl in Pooling Blood. "Trying to keep two girls with severe hemophilia alive, takes guts." And how are the girls doing? Teresa is now able to manage part-time employment at Starbucks and Maria has graduated from college and is on her way to becoming an architect.
About the Author
Cheryl Nineff D'Ambrosio has worked as a process developer for The Boeing Company for twenty-five years. She is the Founder and Director of MyGirlsBlood, a nonprofit charity and international social network dedicated to providing awareness for girls and women with bleeding disorders. She has recently been invited to present her abstract, "Achieving more Rapid Treatment through a High Trust Network," to the Hemophilia World Congress - 2010 in Buenos Aires. She and her husband, Tony, live in the Pacific Northwest. For more information, visit http://www.MyGirlsBlood.com.
iUniverse offers a variety of publishing services to help individuals publish, market and sell fiction, poetry and nonfiction books. The company utilizes print-on-demand technology, and is one of the largest self-publishing companies in the U.S. iUniverse is based in Bloomington, Indiana.
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Pooling Blood Available from: http://www.iUniverse.com, http://www.bn.com, and http://www.amazon.com. February 2010 - 6 x 9 - 316 pages Paperback - ISBN: 9780595530557 - $22.95 Dust Jacket Hardcover - ISBN: 9780595517862 - $32.95