Product Description
The Textbook of Hemophilia has become a definitive resource for all those managing hemophilia patients. It covers all the common and rare bleeding disorders, both in terms of clinical management as well as the genetic, laboratory, financial and psychological aspects.

This second edition covers all the latest developments in the field of hemophilia, with new chapters on:

• the genetic and molecular basis of inherited blood disorders
• how to manage adolescent and older patients
• emergency medicine and inherited blood disorders
• national hemophilia databases

Drawing on the vast experience of the authors, the aim of this textbook remains the same - to improve the care of patients suffering from hemophilia. The book is full of detailed guidance and advice on everyday clinical questions making it invaluable to all trainee and practicing hematologists. ... Read more

Product Description
On January 3, 1987, teenager Vaughn Ripley receives what seems to be a death sentence. A lifelong hemophiliac, he has been infused with tainted blood and is found to be HIV+. In this memoir, Ripley not only recounts his life living with severe physical ailments, but also details his fight to live.Survivor follows him as he receives his fateful news and examines how this single piece of information pushes the innocent boy headlong into a hard life of drugs and alcohol. After several years and many near-death incidents, he finally overcomes the drug addiction and tries to create some semblance of life out of the resulting carnage.He describes how he turned his life around to become a professional database administrator, how hemophilia contributed to his tendency toward being an adrenaline junkie, and how medical advances allowed Ripley and his wife to become parents. His story is one of courage and tenacity, as he demonstrates the will to face the world head-on and overcome the physical ailments in order to lead an active, productive, and positive life. ... Read more

Customer Reviews (4)

Two very different stories
Vaughn's life could have been scripted in the tradition of Joseph Campbell's hero monomyth.From the outset, you root for Vaughn as he overcomes bullying and his self-restriction from the activities he loved because they were too dangerous for someone with his hemophilia. Just as he has begun to find inner strength, his life is devastated by the batch or batches of bad blood containing HIV, which is still not his lowest point.

The real strength of Vaughn's writing is his ability to make you forget that he was battling the deadly viruses and deadly bleeding condition.In order to accomplish all Vaughn has accomplished HIV, Hep C and hemophilia had to be an afterthought to him... and his book reflects his thinking.Through the book you learn about the joys of off-road driving, rock climbing, mountaineering, motorcycle racing and all the other brushes with death that Vaughn warped into fantastic reasons to live (as well as database analysis).When reading you imagine yourself without fear, simply going out and doing all of the things the back of your head tells you that you cannot or should not do.Mid fantasy, imagining yourself capable of removing your fear, Vaughn writes a paragraph talking about throwing up his anti retroviral therapy multiple times a day and the fantasy comes crashing down around the reader into an unbelievable reality.

Vaughn's book builds a story of an entirely normal man with a very diverse set of interests and accomplishments, but the intermittent reminders of how tenuous his hold on life is compared to the reader's makes his story anything but ordinary.Survivor is clearly two different stories.There is one story that is of a normal life, where a teenager pushes his limits, finds his way through the women he loves and builds his career slowly and steadily through hard work.The second story is one where the fear of death and pain is completely removed from an otherwise normal, if not timid individual and what is possible if you throw caution to the wind and simply go for it.The two stories woven together create an inspiring story applicable and relevant to all of us.We all have limited time to live, and reading Survivor is an excellent reminder to get off the couch and get moving... regardless of our current struggles or lingering demons.

One Man's Review of Survivor: One Man's Battle . . .
Just finished this book, and am glad I read it.In it, Vaughn Ripley opens a window into a life in which he was dealt a lousy hand and still managed to win the game.Born with hemophilia; contracted HIV and Hepatitis C from a blood transfusion as a child; Vaughn started life a few strikes behind.This book details how that adversity shaped him as he grew and made him the man he is today, successful, funny, happy, loved and with an awesome wife and two beautiful children . . .after doctors told him as a child he'd die, soon.This is trulyan inspiring story for us all - and entertaining as can be!

Wow great read - could not put it down
Just finished the book.Wow great read!This was also an easy read.Whether you are going through as much as Vaughn or not, it really puts things in perspective for one's own life that someone can have so many things happen to them that would keep them down, but Vaughn fights back and pursues life to its fullest.It's an adventure story of Vaughn traveling through and conquering life.I expected the adrenaline junkie and health aspects based on the descriptions I've seen and it was great that he included all the other aspects of his life.I like the format, it covered Vaughn's every emotion thinkable invoking much emotion from me.

I so very much recommend reading this book for anyone even if its just for the adventure!!!

Amazing Story
Survivor is the amazing story of Vaughn Ripley's life with HIV.The obstacles he's had to overcome are significant and his accomplishments are many.From the wild ride he went on after the original diagnosis to his adult life, every page brings a new adventure.

This is a MUST read! ... Read more

Product Description
For thousands of years boys known as "bleeders" faced an early, painful death from hemophilia. Dubbed "the Royal Disease" because of its identification with Queen Victoria, the world's most renowned carrier, hemophilia is a genetic disease whose sufferers had little recourse until the mid-twentieth century. In the first book to chronicle the emergence and transformation of the hemophilia community, Susan Resnik sets her story within our national political landscapewhere the disease is also a social, psychological, and economic experience.Blood Saga includes many players and domains: men with hemophilia and their families, medical personnel, science researchers, and the author herself, who was Director of Education of the National Hemophilia Foundation in the early 1980s. At that time the "miracle treatment" of freeze-dried pooled plasma blood products enabled men with hemophilia to lead full, normal lives. Then the AIDS virus infiltrated the treatment system and over fifty percent of the hemophilia community became HIV-positive. But rather than collapsing, this community refocused its priorities, extended its reach, and helped shape blood safety policies to prevent further tragedy.The hemophilia community includes people from every socioeconomic and ethnic group, and Resnik's narrative and use of oral histories never lose touch with those affected by the disease. Her extensive informant interviewing allows much of this social history to be told by participants on all levels: parents, wives, nurses, doctors, government agency directors, health care providers, and many others.Gene insertion therapy now holds the promise of a cure for hemophilia in the near future. Scientific breakthroughs inevitably become intertwined with the industry and academic medical centers that govern the national health care system. And in that system, says Resnik, costs and safety are sometimes contending issues. She makes clear that the lessons learned in Blood Saga apply to all of us. ... Read more

Customer Reviews (2)

Despicable
Shame on the author for participating in the widespread "sweeping under the carpet".

The blood distributors deliberately sold infected hemophilia products and millions were infected with hepatitis, AIDS, etc.They intentionally used risky paid donors and unsafe manufacturing techniques because they figured the hemophiliacs were a small group they could abuse w/o anyone caring, and they'd be dead without the medications anyway.When they encountered resistance from the government, they just bribed and strong armed the government to let them keep doing these things--long after it wasn't legal to use these tactics to make blood products for non-hemophiliacs.

National Hemophilia Foundation sold their soul by taking big payments from these companies and even testified in court against the hemophiliacs.

There has never been any meaningful or comprehensive apology/retribution to those affected.

A more truthful retelling of this story is: [...]

Interesting Tale of a Unique Medical Tragedy of our Times
Fascinating read where the cure for the hemophilia community ended up killing those it meant to save. Resnick's style makes easy reading of a complex story. ... Read more

Product Description
More than 6,000 human diseases, including Down Syndrome, Hemophilia, and Sickle Cell Disease, have been linked to genetic causes.While some diseases can be managed to allow sufferers to enjoy a near-normal lifestyle, others are invariably fatal. Genetic Disorders Sourcebook is a comprehensive collection of authoritative information presented in a nontechnical, humanitarian style for patients, their families, and caregivers. ... Read more

Product Description
Defective genes are responsible for an estimated 4,000 hereditary disorders. Children inherit these disorders from their parents in many different ways. While biomedical researchers have now identified most genes associated with genetic diseases, there are no absolute cures for these diseases today. Scientific advances have enabled affected people to experience longer and more comfortable lives, because they and their families have more beneficial means of coping with genetic disorders.

This second edition Sourcebook provides new and updated information to help laypeople understand the working of genes, the ethics of gene testing, and the causes and treatments of some of the most common genetic disorders. The book also covers the lifestyle expectations of individuals who suffer with these disorders, their disease management and care, and current research initiatives to prevent and cure gene defects. A glossary of genetic terminology and a directory of resources provide additional support and information. ... Read more

Product Description
After centuries of misinformation about hemophilia, the science of genetics and the knowledge of how blood clots opened the door for understanding, new treatments, and a more normal lifestyle for sufferers of the disease. Researchers continue pursuing a cure for hemophilia in the 21st century. (20051001) ... Read more

Product Description
There is great enthusiasm and hope - realistic hope - for a cure for hemophilia, as well as for HIV infection. The challenges to bring these hopes to reality are reflected in this book. The papers in this volume represent the authors' views and experience concerning a wide variety of timely issues related to hemophilia, von Willebrand's disease, their treatment and complications. These include musculoskeletal complications, inhibitors, hepatitis and its sequelae, human immunodeficiency virus (HIV) and aquired immunodeficiency syndrome (AIDS), as well as new technologies (and their costs), future strategies including gene insertion, and also global issues related to the basic needs of persons with hemophilia in developing countries. ... Read more

Product Description
These are the proceedings of the international symposium tohonor Dr. Harold R. Roberts, held in Chapel Hill, North Carolina inApril of 1999.
The volume covers prions and viral transmissions, unexplained aspectsof hemophilia and hemostasis, novel approaches to therapy, andinhibitor development in hemophilia patients. ... Read more

Product Description
This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to hemophilia (also AHF Deficiency; AHG Deficiency; antihemophilic factor deficiency; antihemophilic globulin deficiency; Christmas disease; classic hemophilia), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on hemophilia. Given patients' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms. ... Read more