Hemophilia Books

Hemophilia - A Bibliography and Dictionary for Physicians, Patients, and Genome Researchers In March 2001, the National Institutes of Health issued the following warning: "The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading." Furthermore, because of the rapid increase in Internet-based information, many hours can be wasted searching, selecting, and printing. Since only the smallest fraction of information dealing with hemophilia is indexed in search engines, such as www.google.com or others, a non-systematic approach to Internet research can be not only time consuming, but also incomplete. This book was created for medical professionals, students, and members of the general public who want to conduct medical research using the most advanced tools available and spending the least amount of time doing so.

It's Midnight and I'm Not Famous Yet BEFORE THE MONKEYS CAME An Honorable Mention in Writer's Digest Self-publishing Book Awards, Literary/Mainstream Category BEFORE THE MONKEYS CAME By W. P. Strange "..a painful journey..told with heartbreaking clarity. ..the style and grace of W. P. Strange's writing.. Will leave you wanting more.." BRAVO, David Chivers "Frank's sarcastic but lovable voice.his sense of humor, and honest introspection make him..a character I care about..The narration is so personal, so soul bearing..the language is poetic and rhythmic ..Great observations about people and life. The dialogue is natural and engaging.an author.making an artistic attempt to go above and beyond." WRITER'S DIGEST Order from Amazon.com, Borders, Barnes and Noble or your local bookstore Or at Xlibris.com. Hardcover $25.95 / trade paperback $17.95 Contact the author at: wpsedit@gmail.com IT'S MIDNIGHT and I'M NOT FAMOUS YET, a new novel by W. P. Strange Every life has its challenges, and David's is no exception. After a lifetime battling the pain and damage that hemophilia has done to his joints, a blood product, factor VIII, meant to slow the advancement of the disease has infected him, and 90% of hemophiliacs with HIV, the virus that causes AIDS and the death toll begins to mount. Now as he is about to turn the big four-O, someone told his employer at the architectural firm where he has worked for fifteen years that David has AIDS and he is fired. Muriel, his wife seems to be drifting away and he thinks he is trying too hard to live vicariously through his two sons and their little league team. Then when a close friend who also has hemophilia and is HIV positive, commits suicide David begins to feel the hopelessness of the predicament. But he has never learned how to quit, and does the only thing he can think of, he starts over. With the help of a psychologist who David thinks is a bit out of touch, he begins to rebuild his life again.

Musculoskeletal Aspects of Haemophilia Edited by two leading orthopaedic surgeons specializing in the treatment of haemophilia, and an acclaimed haematologist, Musculoskeletal Aspects of Haemophilia draws together, within a single volume, all the information needed for the practical treatment of the musculoskeletal complications of haemophilia.

A practical 'hands on' guide designed for use on the ward, in the office and at the computer, this book draws on the experience not only of two major centres (Madrid, Spain and London, UK) but also of numerous specialists worldwide. In addition to orthopaedic surgery, it also covers research, rehabilitation and physiotherapy.

While of primary interest to the orthopaedic surgeon, rheumatologist, physiatrist and physiotherapist, this book will also be relevant to the haematologist responsible for the care of the haemophiliac patient.

When mathematician Tom Andrews slips and breaks his ankle on an icy Ann Arbor street, it is no ordinary fracture: for Andrews, a hemophiliac, the fall begins a "bleed"-that is, the pooling of blood beneath the skin that can cripple a hemophiliac. During his agonizing hospital-bound convalescence, he is doped up on codeine, a drug that sends him spiraling into reveries about his disease and the way he'd combated it with the seemingly self-destructive pursuits of his adolescence. Yet there was a family illness that overshadowed even his: his brother's terminal kidney disorder. In order to get his parents' attention, Andrews threw himself into breaking world records (for hand-clapping), motorcycle racing, competitive skateboarding, punk rocking, and other foolhardy pursuits that only emphasized for him how, in his parents' eyes, he would always be "the healthy son." Unfailingly strange and intense, unremittingly witty, Andrews's book is a memoir that transcends its subject and becomes the story of man's desire to inhabit the world fully no matter what the cost.

Living with Haemophilia Living with haemophilia has established itself as the complete guide to haemophilia and related disorders. Written primarily for affected families, the. book also provides a useful and up-to-date guide for doctors, paramedical staff, including nurses and physiotherapists, and teachers. It explains the inheritance of haemophilia, bleeding episodes and how to control them, safe treatment including home therapy and prophylaxis, and the prospects for a genetic cure. Other coverage includes DT Sex and family planning DT Childhood with haemophilia DT Education and employment DT Sports and travel DT Previous side effects of treatment including HIV and AIDS Sensitively and clearly written at an appropriate level for those with haemophilia, their families and friends. This book aims to dispel the myths and raise awareness of the realities of haemophilia. It takes a positive approach to physical development and encourages the pursuit of healthy, active and fruitful living. Peter Jones shows how, with the right care, the person with haemophilia can live an active and normal life. He addresses all the questions that those with haemophilia or those caring for them need to know the answers to, with humour and genuine concern. He has worked with those affected by it for over 30 years and this book contains his wealth of experience. "All of those who come into contact with haemophilia should read this book" Journal of the Royal College of Physicians Features include DT Bullet pointed lists of dos and don'ts for those caring for haemophilic children DT Boxes containing key information DT Clear simple drawings showing treatments and exercises

This book is an invaluable resource that provides an overview of all aspects of the care of patients with haemophilia.

Covering how to assess both bleeding children and adults, Haemophilia A and B, molecular basis of the disease, the role of factors in coagulation, epidemiology, pharmacokinetics, and treatment of inhibitors. There will also be a section on musculoskeletal aspects of haemophilia as well as newer developments such as gene therapy and rare bleeding disorders.

Blood Saga: Hemophilia, AIDS, and the Survival of a Community, Updated Edition With a New Preface 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 landscape--where 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.

It¹s 1916, the struggling Russian people are tired of war and are blaming their Romanov rulers for it, and some are secretly plotting to murder the young heir and his family. But nobody outside the palace knows that Alexei suffers from a terrible bleeding disease, hemophilia, which threatens to finish him off even before the family¹s enemies can. The only person able to help Alexei is the evil and powerful religious mystic Rasputin -- and now Rasputin is trying to kill him too! Desperate, Alexei flees through time to New York City in 2010, using a method taught to him by the mad monk himself.

In New York, Alexei meets smart and sassy Varda Rosenberg, and discovers she is a distant cousin. Varda is working on a gene therapy cure for hemophilia, as the disease still runs in the family. When Alexei learns that history shows that his entire family will be assassinated in 1918, he and Varda travel back in time to the Russian Revolution, with Rasputin hot on their heels. Will they be able to rescue Alexei¹s family before it¹s too late?

Staton Rabin lets Alexei tell his own riveting story in a rousing adventure with stunning surprises -- a movingly authentic look at royalty and revolution in the days of the tsars.

Recommended Books on Hemophilia