Caring for Children & Adolescents

The following e-book has been developed and updated by Professor Sillence and Dr Jenny Ault.  It is a valuable resource for any parent or a child with OI.

Preface

(Second Edition)

This second edition of the Osteogenesis Imperfecta – Handbook on Care for Children and Young People with OI is provided free as an internet book. Its publication is supported by OI Australia Inc and ConnecTeD Inc. The aims are to support families and parents of young people with OI, provide updated information and stimulate research into the various facets of Osteogenesis Imperfecta. We wrote the book to help parents with the day to day care of their child with (OI), and to minimise disability in adult life. Living with a “fragile” infant or child can be a frightening experience at first.

It is very reassuring to know that there are thousands of adults with OI in the world who are living very normal lives. There are rapid advances in treatment which reduce fracture frequency and improve walking and opportunities for sport. A multidisciplinary program for young people with OI was started in Sydney at the Camperdown Children’s Hospital in 1987. While there are many types of OI, multidisciplinary management, including use of the new bisphosphonate therapies, has dramatically changed the lives of young people with OI. At this time, Cyclic Intravenous Pamidronate is still the “Gold Standard” bisphosphonate regimen for treating children with OI.

This volume is dedicated to the many children and adults with OI around the world, whose courage and ingenuity have triumphed over the challenges from their particular type of OI.
Professor David Sillence
Professor of Medical Genetics
Head, Connective Tissue Dysplasia Clinic,
including OI Management Services
Dr Jenny Ault Consultant in Paediatric Rehabilitation

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Osteogenesis imperfecta (OI) is a genetic disorder that causes a person's bones to break easily, often from little or no apparent trauma. OI is also called "brittle bone disease." OI varies in severity from person to person, ranging from a mild type to a severe type that causes death before or shortly after birth.

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