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AN OSCAR FOR MY TROUBLES
By Neville Clare
ISBN 978-0955593208
PRICE: £9.99
SYNOPSIS
About twelve thousand people have
full-blown sickle cell disorder in Britain. It is often devastating
in its pain and its impact on patients' lives. Perhaps ten times
more have the trait, or 'carrier status'. However this book has far
wider significance. Sickle cell disorder 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imposed on and later withdrawn from patients. It also tells of a
life, from Jamaican childhood to adult struggles an ocean apart,
battling chronic pain -- and battling ignorance and
prejudice.
Neville Clare founded the first sickle
cell charity and self-help group in Britain. He has spent three
decades campaigning for better awareness and treatment of sickle
cell disorder.
Here he explains the real significance of
the disorder today, and why it should be seen as anything but a
“minority” issue.
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