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Living With Haemophilia

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Living With Haemophilia

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Author : C. Jones
language : en
Publisher: Springer Science & Business Media
Release Date : 2012-12-06

Living With Haemophilia written by C. Jones and has been published by Springer Science & Business Media this book supported file pdf, txt, epub, kindle and other format this book has been release on 2012-12-06 with Medical categories.

, For the most part we. the haemophiliacs present at this Congress. have come from the great metropolitan centres with their advanced medical and social programmes for sufferers of haemophilia. We. the fortunate from the haemophilia oasis. have much to learn from each other. This is important. but even more important is the urgency to convey your knowledge. your skills. your experience and your dedication to the haemophiliacs in the desert: 'We can only begin to understand the condition. the life of a sufferer. by comparing him to a soldier in the trenches of World War I. In the trenches the soldier seldom forgets that the next moment may bring death or crippling. The haemophiliac is literally in the trenches. The soldier may be spared injury. but pain awaits the haemophiliac. Fear. moreover, is paramount to the pain. As in the trenches. the anxiety can be more oppressive than the wound. Waiting to go over the top imposes a greater strain than the actual charge. For the soldiers that survived World War I in the trenches. 4 years seemed eternity; the haemophiliac never leaves the battlefield: Opening Address, Frank Schnabel. World Federation of Hemophilia. Copenhagen. June 25th. 1963. War can come to an oasis, peace can come to the trenches. With this book, Dr Peter Jones has joined the international struggle. Carefully, concisely and cogently. the text offers a grand strategy. With allies like Dr Jones we will, one day, achieve victory. Frank Schnabel, Chairman.

Living With Haemophilia

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Author : Peter Jones
language : en
Publisher: Oxford University Press, USA
Release Date : 1990

Living With Haemophilia written by Peter Jones and has been published by Oxford University Press, USA this book supported file pdf, txt, epub, kindle and other format this book has been release on 1990 with Language Arts & Disciplines categories.

First published in 1974, this book helped foster new attitudes to the hereditary bleeding disorders by encouraging affected families to lead full and active lives. It has been well received by both the medical and general press and has been translated into many languages around the world. This new edition has been extensively revised and updated to include, in particular, a section on AIDS. Throughout the book, the subject matter is clearly explained in nontechnical terms. It is intended for a general readership, including the families of those affected by haemophilia, as well as their doctors and other caregivers.

Injection Of Life

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Author : Robert Weatherall
language : en
Publisher:
Release Date : 2015-10-30

Injection Of Life written by Robert Weatherall and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2015-10-30 with Brothers categories.

My Autobiography is of my brothers and myself living with Haemophilia through our lives. I am the oldest and only one left to tell this story of us three boys growing up, and our family experience. It hasn't been easy back in the fifties & sixties as there was not much and technology around for us Haemophiliacs until the mid-sixties. My brothers had a restricted life, because of the lack of technology to help them through their sickness. But we hope there might be a cure for us soon. It may not be around for me, but for the young one, you don't know what technology has in store in the future.Wayne John d. 1994 Aged 32 Died of Aids

Living With Haemophilia

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Author : Peter Jones
language : en
Publisher: Oxford University Press, USA
Release Date : 1998

Living With Haemophilia has established itself as the complete guide to haemophilia and related inherited bleeding 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, andteachers. 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. Now available in paperback, this book will continue to be an essential purchase for all those affectedwhether directly or indirectly by haemophilia.

Hemophilia

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Author : Edward Willett
language : en
Publisher: Enslow Publishing
Release Date : 2001

Hemophilia written by Edward Willett and has been published by Enslow Publishing this book supported file pdf, txt, epub, kindle and other format this book has been release on 2001 with Juvenile Nonfiction categories.

Discusses hemophilia, the genetic disease that strikes primarily males, including diagnosis, treatment and current research on its prevention.

A Bleeding Nuisance

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Author : Julie Park
language : en
Publisher:
Release Date : 1995

A Bleeding Nuisance written by Julie Park and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 1995 with Hemophiliacs categories.

Hemophilia

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Author : Beverly Britton
language : en
Publisher:
Release Date : 2003

Hemophilia written by Beverly Britton and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2003 with Juvenile Nonfiction categories.

Discusses the history of the disease, how it is diagnosed, and the treatments available.

The Social Ecology Of New Technologies And Haemophilia In New Zealand

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Author : Julie Park
language : en
Publisher:
Release Date : 2008-01-01

The Social Ecology Of New Technologies And Haemophilia In New Zealand written by Julie Park and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2008-01-01 with Hemophilia categories.

This research builds on previous studies conducted by the "Living with haemophilia" researchers over the past decade in New Zealand. The current study investigates the implications of new treatments, new technologies, and changes in health care for people and families with haemophilia and those who care for them, in the context of everyday living with haemophilia. The research design used semi-structured face-to-face interviews and/ or telephone interviews with 37 people, and participant observation at a range of haemophilia gatherings. We asked people to share with us their perceptions and/ or experience of prenatal genetic diagnosis, preimplantation genetic diagnosis, gene therapy, and new treatments for hepatitis C, as well as their everyday experiences with haemophilia. The study design and the reasons we undertook it are described in the introduction. The first substantive section highlights the everyday issues of living with haemophilia as a bleeding disorder. The second discusses the organisational ecology of haemophilia. The third traverses issues concerning haemophilia as a genetic disorder, passed down the generations, and the final section explores the presence of hepatitis C in the haemophilia community. In the conclusions we note that there are still some difficulties around the timely diagnosis of haemophilia. However, treatment for many people has changed from on-demand to prophylaxis and from the provision of blood products to recombinant products. These technologies have had significant effects on perceptions of the seriousness of haemophilia, on the safety of products, on daily living, and on relationships with the treatment sources: from products made from donations, to those manufactured by multinational pharmaceutical companies. There was a high level of awareness of the costs of treatment, compared to the earlier studies. The formation of a National Haemophilia Management Group, which was a result of years of work between the Haemophilia Foundation of New Zealand (HFNZ), medical experts, and Ministry of Health officials, was a very welcome development in 2006. The HFNZ continues play an important part in many people's lives. Despite a continuing emphasis on women as carriers, there is a greater realisation that men, too, pass on haemophilia, and that women can suffer from bleeding problems. Parents were exercised by the timing of when to tell their daughters about their carrier status, but carrier testing very seldom incurs the long delays of earlier years. Issues around carrying haemophilia on and reproductive choice are handled with great care in this community. A wide range of views were encountered, tempered by respect for the positions of others. Discussion of gene therapy was a little passé in this community, as it had been on an ever-moving horizon for many years, and because new alternative treatments were seemingly offering considerable benefits. However, gene therapy was not dismissed as a future possibility. Hepatitis C has had important effects on this community and on the individuals within it: effectively there is a hep C generation and a post-hep C generation. It was heartening that those undergoing the most recent form of treatment appeared to be experiencing better outcomes, although the treatment itself was gruelling. At the end of this research period, a Government announcement of acknowledgement, compensation and treatment was made, fulfilling a decade and a half of struggle for recognition of harm.

Haemophilia In Aotearoa New Zealand

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Author : Julie Park
language : en
Publisher: Routledge
Release Date : 2019-01-24

Haemophilia In Aotearoa New Zealand written by Julie Park and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2019-01-24 with Social Science categories.

Haemophilia in Aotearoa New Zealand provides a richly detailed analysis of the experience of the bleeding disorder of haemophilia based on longterm ethnographic research. The chapters consider experiences of diagnosis; how parents, children, and adults care and integrate medical routines into family life; the creation of a gendered haemophilia; the use and ethical dilemmas of new technologies for treatment, testing and reproduction; and how individuals and the haemophilia community experienced the infected blood tragedy and its aftermath, which included extended and ultimately successful political struggles with the neoliberalising state. The authors reveal a complex interplay of cultural values and present a close-up view of the effects of health system reforms on lives and communities. While the book focuses on the local biology of haemophilia in Aotearoa New Zealand, the analysis allows for comparison with haemophilia elsewhere and with other chronic and genetic conditions.

Raising A Child With Hemophilia

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Author : Laureen Kelley
language : en
Publisher:
Release Date : 2016-04-01

Raising A Child With Hemophilia written by Laureen Kelley and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2016-04-01 with categories.

A parenting book covering medical, consumer, emotional and practical child-rearing aspects of raising a child with hemophilia.

Living With Haemophilia

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