Product Description

Edited by two leading orthopedic surgeons who are specialists in the treatment of hemophilia, Orthopedic Surgery in Patients with Hemophilia shows all the surgical techniques needed for surgical treatment of musculoskeletal complications of hemophilia. A practical guide, designed for use on the ward or in the office, this book draws on the experience of numerous specialists worldwide, from developed and developing countries. As well as orthopedic surgery, it also covers research, hematology, and rehabilitation. Although of primary interest to the orthopedic surgeon, rheumatologist, and physiotherapist, this book will also be relevant to the hematologist responsible for the care of the hemophiliac patient.

Product Description
"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. Their story underscores the importance of parents fostering personal competencies and selfefficacy for early recognition of bleeding problems and for obtaining prompt and effective treatment. But the vivid unfolding of their narrative reveals disturbing fl aws in our healthcare system where professionals all too often fail to hear the voices of the real experts, patients and their families. Embedded is judicious advice not only for individuals and their families, but also notably for healthcare providers. Emanating from these personal experiences is a call for continued development of strong interdisciplinary healthcare teams that embrace a holistic care perspective and a capacity to coordinate team functions to address the complexities of treating bleeding disorders and their associated physical risks, as well as related social and emotional ramifi cations. While there are challenging journeys ahead for this family and others, I envision smoother roadways given the insight and wisdom captured in this compelling chronicle."

-Arthur R. Thompson, MD, PhD Co-Director, Hemophilia Treatment Center, Puget Sound Blood Center, 1973-1987 And Director, 1987 - 2008.
Professor Emeritus, Medicine and Hematology,
University of Washington, Seattle, Washington ... Read more

Customer Reviews (9)

A riveting story that sheds light into the many challenges that hemophilia brings into life
Hemophilia is a horrible disorder which has a high mortality rate. "Pooling Blood: A Journey of Two Girls with Hemophilia and Their Parents' Struggle to Keep Them Alive" tells the story of D'Ambrosio family as the two parents face the challenge of their daughters fight with hemophilia, a disorder which can turn the simplest cut into a life threatening incident. "Pooling Blood" is a riveting story that sheds light into the many challenges that hemophilia brings into life.

excellent read
Pooling Blood is a beautiful story about one family's journey through life. It is told in the loving voice of Cheryl D'Ambrosio, who stepped into the world of her husband and two daughters, Teresa and Maria, both of whom live with a serious bleeding disorder called Factor V deficiency. Not only is this book a true testimonial of love on many levels but also an education in how to maneuver through a complicated medical system dealing with a complicated disorder. It reads as if Cheryl is sitting right there with you. The warmth of her voice throughout helps the reader get through the difficult and painful passages detailing their girls' struggle to get their bleeding episodes under control while continuing to live their lives to the fullest. But we're just reading about it. I am so thankful that Teresa, Maria, Anna, Tony and Cheryl had and continue to have so many good people who have been there for them all these years. Doctors, nursesand other professionals in the medical community, the bleeding disorders community and wonderful family and friends. To say their story is inspirational doesn't feel like quite enough. Teresa and Maria are beautiful beings continuing to live their lives and follow their dreams. In yoga we say Namaste at the end of our practice which means "the divine in me recognizes the divine in you". Thank you and Namaste, D'Ambrosios, for sharing your story, it reminds this reader how connected we all are and how important and vital that connection is.

Cat Stulik, MSW
Social Worker at the Hemophilia Care Program, Seattle, WA

A must read for every thinking person in America.
Hemophilia is a rare and frightening congenital disease among boys, but among girls it is practically unheard of.In fact, it is estimated that there are fewer than ten girls in the United States with a severe bleeding disorder, known as Factor V deficiency, and in wonderfully intriguing unflinching prose, Cheryl tells us the story of two of them.Teresa and Maria will capture your heart, as they did Cheryl's, in their daily struggle to grow up and live with a life threatening condition.

Cheryl's story begins with finding herself divorced and alone at age thirty five in Seattle.A few awkward dates with Tony, an architect, and Italian chef, who happened to be a single father of two young girls, gave her only a few clues as to what would happen next.Do you believe that one woman can make a difference in the world?Do you believe that one woman can persevere in a life and death struggle against enormous odds through wit and willpower?Do you believe that love and kindness conquers fear and indifference?Do you believe in ghosts?If not, this intelligent, personal, touching narrative will expand your world view and improve your faith in the human race.

Cheryl's remarkable journey contains many lessons and also raises many questions of a deeper nature for us all.Learning how to prevent a simple nose bleed from turning into a life threatening medical emergency is not something that everyone will need.However, learning how to acquire the knowledge and reasoning to become your own health care advocate is something that many will need and most will benefit from.Cheryl and Tony's ongoing battle on the front lines with the health care system, hospitals, providers, and insurance companies is a timely wake-up call for everyone.

Cheryl's lessons learned as a health care advocate for her step daughters who are now adults, provide a recipe for parent/patient/provider teamwork that should become a model for treatment of chronic conditions.Indeed, this true life narrative lays down a roadmap that will benefit patients, parents, practitioners and institutions alike.Finally, Cheryl's story of Teresa and Maria issues a challenge to our best and brightest medical, pharmacological, and genetic researchers that their work will not be done until they find a cure for even the rarest of human diseases.In fact, I would remind our scientific community that miracles and breakthroughs often hide in such places. Someday I want to see those transgenic pigs fly, and I want to see Cheryl's dream become a reality. Cheryl's story provides the inspiration.

Dr. Richard A. Hull, Ph.D.

This journey is beyondwhat most of us can ever comprehend
The courage and willpower of this family is beyond what most of us can ever comprehend.
I've worked for many years recruiting blood donors.The importance of donating blood is also something many us don't comprehend. Volunteer blood donors help save lives! By reading this book you'll discover even more why that is so important! Thank you, Cheryl and family for giving us your family story.

A Riveting Personal Account
In June of 1993, Cheryl married Tony D'Ambrosio. She then became the step-mother to two girls with severe Factor V Deficiency, a very rare genetic bleeding disorder equally affecting both males and females. Cheryl may have been "clueless in Seattle," but she was not the only one to be clueless about bleeding disorders in women.Prior to that era, general awareness was only beginning to emerge about this phenomenon. Because hemophilia A and B are sex-linked disorders occurring predominantly in males, bleeding disorders in women had been largely under-examined, even within the bleeding disorders community. Pooling Blood is Cheryl D'Ambrosio's personal account of raising two girls with a severe bleeding disorder. She describes in vivid detail the overwhelming stress experienced by her family in view of the consequences of the girls' Factor V Deficiency.D'Ambrosio's family had to cope not only with bleeding episodes and their complications, but the inability of health care teams they encountered to respond appropriately to various medical crises. Ms. D'Ambrosio, a devoted caregiver, eventually became a staunch champion of greater awareness and better treatment of bleeding disorders in all girls and women. She has helped create an effective social networking and advocacy base for the entire community. She makes us all aware of the need for enhanced communication within our health care system and need for women with bleeding disorders and their families to strive toward self-empowerment. D'Ambrosio's narrative is enlightening for all readers. It is particularly thought provoking for all health care professionals, not only those in the bleeding disorders field.It provides all interdisciplinary health team members with insight into what it is like to live on "the other side," as a patient and family member. After reading this account, we might all emerge a little less "clueless."

Jacqueline Lefkowitz, LCSW-R, MA, MSW
Master Clinician Social Worker
New York Comprehensive Center for Hemophilia and Coagulation Disorders
New York Presbyterian Hospital-Weill Cornell Medical Center
... Read more

Product Description
"Over 17,000 people in the United States have hemophilia. About 9 out of 10 people who have hemophilia have type A. Each year, about 400 babies are born with the disorder. Hemophilia usually occurs only in males (with very rare exceptions). Thishandbookis an attempt to provide a brief and concise picture aboutthe various bleeding disorders with an emphasis on hemophilia .The various available treatment options for these disorders have also been listed for the benefit of the readers." ... Read more

Customer Reviews (2)

Highly Recommended
Great book, on hemophilia. I had to do a research on it and it answered every single question of mine. However, it is recommended reading for all, as it contains great content on the issues haemophilia.Wonderful !!!

Excellent Handbook with lots of useful info
Easily comprehensible handbook with lots of up to date useful information about bleeding disorders. Very useful tool to get a basic understanding of hemophilia and bleeding disorders in a single reading.This book also provides information not provided elsewhere like for example a handycomparison of the various products available along with the per unit cost.After reading this handbook i had a very clear picture about the disease of hemophilia.

I would highly recommend this to anyone wishing to get a clear idea about bleeding disorders within a very short time. ... Read more

Product Description
This digital document is an article from BIOTECH Patent News, published by Biotech Patent News on June 1, 2001. The length of the article is 893 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Cell Genesys obtains results from preclinical hemophilia gene therapy studies.(Brief Article)
Publication: BIOTECH Patent News (Newsletter)
Date: June 1, 2001
Publisher: Biotech Patent News
Volume: 15Issue: 6Page: NA

Article Type: Brief Article

Distributed by Thomson Gale ... Read more

Product Description
The article is excerpted fromGale Encyclopedia of Medicine.

Consultthe second edition of this authoritative, comprehensive, in-depthmedical guide for information on more than 1,700 medical topics inlanguage accessible to adult laypersons. Presented in a singlealphabetical sequence, articles range in length from one or twoparagraphs for minor topics, to several pages or more for major topics.Disease/disorder articles typically cover definition; description;causes and symptoms; diagnosis; treatments; prevention; and more.Test/treatment articles typically cover definition; purposes;precautions; preparation; risks; normal and abnormal results; and muchmore. This second edition includes more than 200 new entries, 300updated entries, approximately 650 color images and illustrations, anda comprehensive subject index. New features include biographical andhistorical sidebars throughout the text.

Disease/disorder articles contain some or all of the following sections:

• Definitions -- brief dictionary-style definition of the disorder
• Descriptions -- overview of the disorder; who gets it and why
• Causes & symptoms -- process, substance or organism thatproduces the condition; any risk factors that increase susceptibilityto the condition; signs and symptoms of the disease
• Diagnosis -- overview of procedures and tests used todiagnose the condition; how the test is done; who should be tested andwhen; time required; cost; whether it's typically covered by insurance
• Treatments -- overview of conventional methods of care ormanagement of the condition, such as drugs, surgeries, physicaltherapy, etc.
• Alternative treatments -- overview of alternative/complementary therapies that may be used to treat the condition
• Prognosis -- probable outcome of the disease
• Preventions -- what actions can be taken to prevent the condition from occurring

Test/treatment articles contain some or all of the following sections:

• Definitions -- brief dictionary-style definition of the test/treatment
• Purposes -- why and when this test/treatment is prescribed
• Precautions -- when this test/treatment should not be prescribed
• Descriptions -- overview of the test/treatment including cost,length of time required, procedures followed, whether typically coveredby insurance
• Preparation -- pre-test treatment procedures, if any
• Aftercare -- post-test treatment procedures, if any
• Risks -- any complications/side effects commonly associated with the test/treatment
• Normal results -- for tests, describes the normal values; for treatments, describes the anticipated outcomes
• Abnormal results -- defines abnormal test values

Published/Released: December 2001

Product Description
Purchase includes free access to book updates online and a free trial membership in the publisher's book club where you can select from more than a million books without charge. Chapters: Ryan White, Jason Robertson, Alexei Nikolaevich, Tsarevich of Russia, Prince Leopold, Duke of Albany, Alfonso, Prince of Asturias, Lord Leopold Mountbatten, Rupert Cambridge, Viscount Trematon, Infante Gonzalo of Spain, Prince Friedrich of Hesse and by Rhine, Prince Waldemar of Prussia, Ray Brothers, Shawn Decker. Excerpt:Alexei Nikolaevich Alexei Nikolaevich, Tsarevich of Russia ( Po a o Cesarevi Aleksej Nikolaevi Romanov ), full title: Heir, Tsesarevich and Grand Duke ( - , Naslednik-Cesarevich i Velikiy Knyaz ) ( 12 August 1904 17 July 1918), of the House of Romanov , was Tsesarevich (the heir apparent , sometimes mistaken as Tsarevich ) of Russia , was the youngest child and the only son of Emperor Nicholas II of Russia and Alexandra Feodorovna . His mother's reliance on the starets Grigori Rasputin to treat Alexei's haemophilia helped bring about the end of Imperial Russia . He was murdered, along with the rest of his family on 17 July 1918, following the Russian Revolution of 1917 . His murder resulted in his canonization many decades later as a passion bearer of the Russian Orthodox Church . Life Alexei was born on 12 August 1904 (30 July, O.S.) in Peterhof . He was the youngest of five children, and the only boy. His older sisters were the Grand Duchesses Olga , Tatiana , Maria and Anastasia . He was doted on by his parents and sisters and known as "Baby" in the family. He was later also affectionately referred to as Alyosha ( ) and Lyoshka ( ). Alexei was christened on 3 September 1904 in the chapel in Peterhof Palace . His principal godparents were his paternal grandmother and his great-uncle, Grand Duke Alexei Alexandrovich . His other godparents included his oldest sister, Olga; his great-grandfather King Christian IX of Denmark ; King Edward VII of the United King... ... Read more

Product Description
This up-to-date and comprehensive set of two CD-ROM discs provides a superb collection of official Federal government documents on the subject of hemophilia. Hemophilia is a rare inherited disorder in which the blood does not clot normally. About 18,000 people in the U.S. have hemophilia. Each year, about 400 babies are born with the disorder. Hemophilia usually occurs in males (with very rare exceptions). People who have hemophilia may bleed for a long time after an injury or accident. They also may bleed into their knees, ankles and elbows. Bleeding in the joints causes pain and, if not treated, can lead to arthritis. Bleeding in the brain, a very serious complication of hemophilia, requires emergency treatment.For patients, practical information is provided in clearly written patient education documents. For medical professionals, doctor reference tools and texts have detailed technical information and clinical background material. There is no other reference that is as fast, convenient, and portable - everything you need to know, from the federal sources you trust. This thoroughly researched collection presents vital information from many authoritative sources: Food and Drug Administration (FDA), Centers for Disease Control (CDC), National Institutes of Health (NIH) and the relevant institute for this disease, and others.In addition to the comprehensive disease-specific coverage, this disc set also includes our Medical Encyclopedia, a $19.95 value! The Encyclopedia presents a collection of official documents about a wide range of medical topics, diseases, illnesses, health and wellness. There is vital information from the National Institutes of Health (NIH), the Centers for Disease Control (CDC), National Cancer Institute, and more. Topics covered include: major diseases, including cancer, heart and vascular disease, stroke, blood diseases and disorders, lung diseases, and neurological disorders such as dementia and epilepsy * CDC Health Topics A to Z, Foodborne Illnesses, Infants and Children, Injuries, Occupational Health, Older Adults, Women * CDC Travelers' Health - Destinations, Vaccinations, Diseases, Mosquito, Tick, Food, Water, Clinics, Yellow Book, Children, Airplanes, Cruise Ships, Special Needs, Relief Workers, * Dietary Guidelines * NIH A to Z from abnormalities to X-rays.Since navigating the Internet to find additional non-governmental medical information can be confusing, we've also provided our exclusive "Guide to Leading Medical Websites" with updated links to 67 of the best sites for medical information! Built-in weblinks let you quickly check for the latest clinical updates directly from the government and the best commercial portals, news sites, reference/textbook/non-commercial portals, and health organizations. ... Read more

Product Description
This digital document is an article from Revista de Biología Tropical, published by Thomson Gale on September 1, 2004. The length of the article is 3994 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Molecular diagnosis of hemophilia A and B. Report of five families from Costa Rica.
Author: Lizbeth Salazar-Sánchez
Publication: Revista de Biología Tropical (Magazine/Journal)
Date: September 1, 2004
Publisher: Thomson Gale
Volume: 52Issue: 3Page: 521(10)

Distributed by Thomson Gale ... Read more

Product Description
Bayer HealthCare and BioRx, a specialty pharmaceutical company, produced this book about Nate a hemophiliac. Written by Chris Perretti Barnes, the mother of a young boy with hemophilia A, the book is the second in a series of books intended to educate children about hemophilia.I AM NATE is designed to introduce preschoolers to hemophilia. The main character of the story, Nate, explains to the reader in his own words that for him, having hemophilia is just as much of a routine in his life as dressing himself and feeding the pets. Author Chris Barnes wrote I AM NATE to help parents initiate a discussion about how their child feels about living with hemophilia. ... Read more

Product Description
"The Gift of Experience" captures the lives and perspectives of twenty-one men, born with hemophilia, and their caregivers, in ways that other resources have failed to do. In vital and personal stories, these individuals speak about the experience of coping with hemophilia. Their accounts capture the impact of the dramatic advances in the treatment of the disease as well as the challenges of chronic pain, joint damage and HIV and hepatitis C infection resulting from the tainted blood supply between the late 1960s and the mid-1980s."Laura Gray and Christine Chamberlain have done a tremendous job weaving these oral histories into a narrative that allows their subjects to speak for themselves. "The Gift of Experience" is a 'must read' for anyone interested in the illness and disability experiences of people with chronic diseases as well as those with bleeding disorders."The Gift of Experience"  is moving and inspiring, a hopeful account of the human experience. ... Read more