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Missing Factor: A Personal Experience Of Haemophilia
When Polly Fielding’s son was diagnosed with severe haemophilia, the only thing she could recall about this blood disorder was “One scratch and you’ll bleed to death”. This, mercifully, is a myth. But learning the true facts about the condition was not easy. Many healthcare professionals, including doctors, knew little more than she did and the available literature was mostly technical and not very reassuring. So in the belief that the best way to deal with an enemy is to be armed with knowledge, Polly set about researching all she could on the subject, interviewing sufferers, haematologists and other haemophilia specialists.
Bit by bit she learned to cope with her son’s haemophilia until it became a background to family life rather than dominating it. And when her GP told her that she knew more about it than he did and that she ought to write a book on the subject, she wrote the book she would have wanted to read when her young son was first diagnosed.
Like all books that deal with medical knowledge it eventually became out of date and she rewrote it in the light of advances in the treatment and care of those with the condition as well as of her own, much greater familiarity with it, following the progress of her son through his teenage years and into adult life. This is that updated book, which was enthusiastically welcomed by the British Haemophilia Society.
It is a book that will empathise with and reassure those who are facing the unknown territory of haemophilia for the first time, as well as giving those already familiar with it an interesting read that will resonate with them. It will demonstrate that it is perfectly possible for anyone diagnosed with haemophilia to lead a full, active and happy life.
The late Claire Rayner, writer, broadcaster and onetime chair of the Patients’ Association, wrote about the paperback edition of this
“Reading technical books about haemophilia is the easiest thing to do and the hardest way of learning what it is really like to have the disease in the family. This is the book you really need to get a rounded picture of what a very distressing genetic disorder can do to an average family. By all means read the technical books afterwards, but read this one first.”
Bit by bit she learned to cope with her son’s haemophilia until it became a background to family life rather than dominating it. And when her GP told her that she knew more about it than he did and that she ought to write a book on the subject, she wrote the book she would have wanted to read when her young son was first diagnosed.
Like all books that deal with medical knowledge it eventually became out of date and she rewrote it in the light of advances in the treatment and care of those with the condition as well as of her own, much greater familiarity with it, following the progress of her son through his teenage years and into adult life. This is that updated book, which was enthusiastically welcomed by the British Haemophilia Society.
It is a book that will empathise with and reassure those who are facing the unknown territory of haemophilia for the first time, as well as giving those already familiar with it an interesting read that will resonate with them. It will demonstrate that it is perfectly possible for anyone diagnosed with haemophilia to lead a full, active and happy life.
The late Claire Rayner, writer, broadcaster and onetime chair of the Patients’ Association, wrote about the paperback edition of this
“Reading technical books about haemophilia is the easiest thing to do and the hardest way of learning what it is really like to have the disease in the family. This is the book you really need to get a rounded picture of what a very distressing genetic disorder can do to an average family. By all means read the technical books afterwards, but read this one first.”
148 pages, Kindle Edition
First published December 16, 2012
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