Sickle cell is a group of disorders that affects haemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. Sickle cell disorder causes episodes or “crises” of extreme pain, when blood cells deform (or “sickle”). You cannot “catch” it. One is born with the disorder, it is life long, and crises can begin in early childhood. Complications can be life-threatening, at any age. ... ||more
Understanding the disorder is vital. Many patients can reduce the frequency of their crises by careful management of their general health - and by limiting their exposure to risk factors such as dehydration, poor nutrition, stress, tiredness, and cold. Patients and their families also need information about the risks of passing on the trait or the full-blown disorder. ... ||more
This book tells of a Jamaican childhood full of lively incident and wide-eyed observation, from the point of view of a boy who was subjected to horrendously misguided treatment for an illness that was not understood. It describes the shock of transplantation to a dark and chill post-war London where poverty and racism were widespread but where community spirit sometimes flourished, and where the struggle to succeed against the odds was not without its moments of fun and friendship.

Neville Clare describes how he found his true life’s work, campaigning about the disorder that afflicted him and that was still regarded as a mystery, or as taboo, by most even in his own community. He has travelled round the country and much of the world, speaking, arguing, organising, and fundraising. From the vantage point of today, it seems hard to believe some of the controversy and opposition that was stirred in the early days by OSCAR’s laudable aims. Other disputes about treatment continue all too sharply, however.

This book tells a story that goes way beyond the medical. It goes to the heart of Black history and politics. This book deals with concepts of race, of disease, of genetics and of patients' rights. It tells the often woeful history of public neglect of the disorder, then of treatments imposed which are later withdrawn from patients. It also tells of a life, from Jamaican childhood to adult; the struggles, the battles against chronic pain as well as against ignorance and prejudice.

This book is radically different from anything that has appeared on Sickle Cell before. It is an authoritative, personal, passionate and brave account of the real significance of this disorder in Britain today and why it deserves a far better deal than to be seen as a "minority" issue.

ISBN: 978-0-99555932-0-8 Publisher: Dr Neville Clare Price: £10.00 (inc. vat)

You can also obtain this book from:

  • WH Smith

If you are unable to obtain the book please contact me directly.