AN OSCAR FOR MY TROUBLES

By Neville Clare

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 It tells the often woeful history of public neglect of the disorder, then of treatments imposed on and later withdrawn from patients.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.