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Perception, Imagination and Change Epilepsy Perception, imagination and change Medical History Museum, University of Melbourne Epilepsy is one of the most common neurological conditions, affecting one in 26 people during their lifetime. Despite its prevalence, epilepsy has long been misunderstood, immersed in superstition, fear and prejudice. In the 19th century neurologists began to understand the causes Epilepsy of the disorder, although misleading terms such as ‘the dreamy state’, ‘psychic seizures’ Perception, imagination and change and ‘double consciousness’ prevailed. Even today, fear and misinformation affect the daily lives of many people with this condition. Epilepsy: Perception, imagination and change explores different cultural and historical perspectives on epilepsy, and includes accounts from scientists and physicians whose discoveries are improving the quality of lives of people with epilepsy. Both the book and the exhibition held at the University of Melbourne’s Medical Edited by History Museum in 2014 embrace research Jim Chambliss, Mark Cook and Jacqueline Healy undertaken by Dr Jim Chambliss in collaboration with artists who have epilepsy. Many of their works are reproduced here, accompanied by their own descriptions of their art and its place in their lives. This book increases our understanding and awareness of epilepsy. The history affects our perceptions of the condition, the artwork shows the power of the artists’ imaginations, and the innovative work of leading researchers points to the changes ahead. Medical History Museum, University of Melbourne Published 2014 by the Medical History Museum, Faculty of Contents Medicine, Dentistry and Health Sciences, University of Melbourne, Victoria, 3010, Australia, http://museum.medicine.unimelb.edu.au. © Copyright the authors, the artists or their estates, and the University of Melbourne, 2014. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of the University of Melbourne. Editors: Jim Chambliss, Mark Cook and Jacqueline Healy Text editor: Belinda Nemec Foreword vii Design: Janet Boschen, Boschen Design Professor Stephen K Smith Photography: Lee McRae Printed in Australia CTP and print by Adams Print Sponsor’s message ix Arnaud Lefevre With thanks to the team at the Epilepsy Foundation, in particular Jeremy Maxwell and Pauline Brockett, for their assistance. Preface xi The exhibition Epilepsy: Perception, imagination and change, curated by Dr Jim Chambliss, Professor Mark Cook and Dr Jacqueline Healy, Professor James D Best was held at the Medical History Museum, University of Melbourne, from 16 April 2014 to 20 September 2014. Epilepsy: Perception, imagination and change xiii National Library of Australia Cataloguing-in-Publication entry: Dr Jacqueline Healy Epilepsy: perception, imagination and change / edited by Jim Chambliss, Mark Cook and Jacqueline Healy. CULTURAL AND HISTORICAL PERSPECTIVES 978 0 7340 4997 1 (paperback) Stigma and epilepsy 2 Professor David Castle Subjects: Epilepsy—History. Epilepsy—Research. Epilepsy—Treatment. Salute to the Hippocratic school of Kos 6 Epilepsy—Etiology. Professor Edward Byrne Epilepsy—Australia. Epilepsy in art. 10 Other authors/contributors: What difference does a name make? Epilepsy in Asia Chambliss, Jim, editor. Professor Chong-Tin Tan Cook, Mark, 1960– editor. Healy, Jacqueline, editor. The history of epilepsy in Victoria 16 Dewey number: 616.853 Professor Peter F Bladin Cat. 100 Phrenology bust, c. 1850–1914; porcelain, ink, brass, wood; 9.5 × 5.0 × 5.0 cm. Gift of Alan Attwood, Medical History Museum, MHM04392, University of Melbourne. TREATMENT AND DISCOVERIES Overview: Epilepsy: stigma, diagnosis and treatment 36 Professor Gregory D Cascino The evolution of medical therapies for epilepsy 42 Professor Frank Vajda Surgery for treating epilepsy 50 Professor Patrick Kwan and Professor Terence J O’Brien Cutting edge: Genetics 58 Professor Sam Berkovic and Professor Ingrid Scheffer Epilepsy: Future directions 62 Professor Mark Cook MILESTONES 67 CREATIVE SPARKS: ART FROM PEOPLE WITH EPILEPSY Insights into epilepsy and creativity through visual art 90 Dr Jim Chambliss Works of art and artists’ statements 106 Works in the exhibition 156 Authors 164 Glossary 168 Cat. 62 Merric Boyd, Truth holds me, pencil on paper, 31.3 × 24.5 cm. 95-0509-001-01, Bundanon Trust Collection. iv Epilepsy: Perception, imagination and change Foreword Epilepsy, called ‘the sacred disease’ by Hippocrates, has presented complex social and medical issues since first identified. For centuries people with this condition have been ostracised from their communities due to a lack of understanding of their condition. Today, new treatments, practices and community education have resulted in far better outcomes for patients and their families. The University of Melbourne is an international research leader in epilepsy and this exhibition and catalogue bring together past, current and future endeavours in this field. This exhibition at the Faculty’s Medical History Museum was curated in consultation with Professor Mark Cook, Sir John Eccles Chair of Medicine and Director of Neurology at St Vincent’s Hospital, Melbourne, and marks the 50th anniversary of the Epilepsy Foundation in Victoria. The accompanying catalogue, Epilepsy: Perception, imagination and change, covers cultural and historical perspectives in Australia and Asia to establish a context for the remarkable breadth of current innovations. It presents the range of treatments and recent discoveries including medical, surgical and genetic approaches. A key aspect of this exhibition is the inclusion of works of art by artists with epilepsy. The artists, through their statements, share with us the personal challenges faced by individuals with this condition. Their creativity is inspiring. This publication brings together the views of people with epilepsy, prominent members of the medical profession, the broader research community and important advocacy organisations such as the Epilepsy Foundation. All represent key aspects of the story of epilepsy from varied historical, medical and personal perspectives. I thank them all for their contributions. I also sincerely thank UCB Australia Pty Ltd for proudly sponsoring this very significant exhibition and catalogue at the University of Melbourne, which celebrate the rich legacy of medical history and current innovative research in this field. Professor Stephen K Smith Dean, Faculty of Medicine, Dentistry and Health Sciences University of Melbourne Cat. 118 Italian, Majolica drug jar for essence of Aconitum napellus (monk’s hood or wolf’s bane), late 18th – 19th century, earthenware, 14.3 × 11.8 cm diameter, inscribed ES. ACCONito NAPElli. Gift of the estate of Graham Roseby, 2009. MHM2009.42, Medical History Museum, University of Melbourne. Epilepsy: Perception, imagination and change vii Sponsor’s message UCB is proud to be a supporter of the University of Melbourne and the creation of this substantial book, Epilepsy: Perception, imagination and change. Established in 1928, UCB was known for many years for its diversified pharmaceuticals, chemicals and films expertise. Since 2004, visionary leaps and agile changes have transformed UCB from a leader in the chemical sector into a leading biopharmaceutical company, featuring a development portfolio of small- and large- molecule drugs focusing on immunology and the central nervous system. Our promise is to help tackle the serious unmet medical needs affecting hundreds of thousands of patients around the globe. This is what drives us every day to never give up on developing innovative medicines in our therapeutic areas of focus: central nervous system and immunology disorders. In recent years we have brought several new therapies to patients living with severe diseases in these areas. Each UCB colleague across the world contributes throughout the activity chain, from early research through to manufacturing and sales, to ensure we provide meaningful solutions to patients and their families. An important part of our philosophy is to take a holistic approach to patients, and we aim to find solutions tailored to their circumstances. UCB hopes you enjoy reading this comprehensive book on the history and treatment of epilepsy. Arnaud Lefevre Managing Director, Australia and New Zealand UCB Australia Pty Ltd Cat. 30 Shea O’Keefe (Australia), A time for rest, 2004, pen and pencil on monoprint, 48.5 × 48.0 cm. UCB Collection. Epilepsy: Perception, imagination and change ix Preface At the inaugural meeting of the National Council of Women in October 1903, Dr Mary Page Stone (1865–1910) gave a paper on the suffering of people with epilepsy and the need for epileptic ‘colonies’. Her presentation so moved the congress that epilepsy became a major issue for the National Council of Women. The result was the establishment of the Talbot Colony for Epileptics. The 1893 student photograph of Dr Mary Page Stone in the Medical History Museum Collection is one of the few surviving images of her. It is most fortunate that in bringing together artists, medical practitioners and historians to evoke the major milestones in the story of epilepsy her story has been uncovered, enabling us to trace the involvement of Melbourne Medical School alumni as one of the earliest Australian milestones. Established by a grant from the Wellcome Trust, the Medical History Museum opened in April
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