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Stickler – The Elusive Syndrome

NEW REVISED EDITION, STILL THE ONLY BOOK ON THE DISORDER

This new edition explains from a layperson’s viewpoint, what Stickler Syndrome is, its genetic implications, its basic medical manifestations, and how it can affect the individual. The book, divided into three parts, provides sound advice by the author, a fellow sufferer, on how to cope with the condition. It includes topics such as other health issues, emotional and social issues as well as a chapter on coping with babies through to adolescence. It also includes a biographical sketch of Dr Gunner B Stickler who defined the condition that bears his name, and how and The Stickler Syndrome Support Group was founded and has expanded. The final section tells the author’s own story of living and coping with the condition, includes other families’ experiences, and ends with some inspirational words from another fellow suffer. This edition, is 50% larger than the first, and also includes some excellent medical colour illustrations and photographs of the author and her family, and those of other families who were willing to share their stories.This book explains, from the layperson’s point of view, what Stickler Syndrome is, its genetic implications, its basic medical conditions, and how it can affect individual people. The author, who is also affected by the disorder, provides advice on caring for children, failing sight and joint pain. The approach is positive and should leave the patient and carer more confident and able to deal with the management of their daily lives.

304 pages – 37 in colour.

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What others have said about the first edition of the book:

This informative book provides a clearly written account of Stickler syndome, its causes and effects. An essential book to have if you are involved in the diagnosis, treatment and care of people who may have Stickler syndrome. After reading it, the syndrome seemed less elusive.

Harry Marsh – Contact a Family (CaF). Share an Idea

Written by a patient who suffers from Stickler syndrome it is intended to provide an informative guide to fellow sufferers and their families in the light of many difficulties this remarkable individual has faced. It covers the articular, auditory and orofacial features in addition to the severe ophthalmic problems. The book is clearly written, easily read, and fulfils the role admirably. The chapter dealing with a sighted person’s interaction with the visually impaired is excellent.

Mr Martin Snead – British Journal of Opthalmology

Wendy Hughes has written extensively over the years and this book demonstrates her ability to communicate clearly. It is recommended reading for both patients and specialists.

D Patton – British Journal of Oral and maxillo-facial surgery

The ability to convey the nuts and bolts of a complicated medical condition, even for those of us who are medically qualified, is an exacting task and is the product of a rare talent, which is there to be seen throughout this book.

Mr R J Cooling – Medical Director Moorfields Eye Hospital

The book seeks to inspire not only people coping with Stickler syndrome, but also those with other chronic disorders. I found this book both readable and informative

Veronica Bevan – RNIB Ophthalmic Information Service

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