The First 20 Questions on Dravet Syndrome

Foreword By Charlotte Dravet

I am happy to present this booklet, The First 20 Questions on Dravet Syndrome, as I believe it is important for you, parents and families, to have a document providing easily understandable answers to the questions you have about your child’s disease.

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The authors are all international child neurologists, following many patients with Dravet syndrome. Their knowledge of this disease is very deep and under the coordination of Prof. Stéphane Auvin, they tried to be as informative as possible.

The aim of this booklet is to help you who have recently learnt your child suffers from Dravet syndrome and are overwhelmed by this diagnosis. We felt it necessary to explain the disease and its consequences in simple, easily comprehensible wordings after the first information given by the doctor. You were most certainly under the shock and, as a consequence, you may have missed or misunderstood some of them. Of course, you wanted to learn more about it, searching on the Internet. Indeed you may have found many sites and forums dedicated to epilepsy and Dravet syndrome. But they may contribute to increase your anxiety because there are a lot of different, often not understandable, sometimes contradictory, writings about the multiple aspects of such a disease. You cannot appreciate their relevance and if they are applicable to your own child.

Without substituting your child’s doctor, this booklet has the ambition to offer a global response to the main questions that come to mind shortly after the announcement of the diagnosis and, later on, in your daily life. The authors have tried to give the right answers without entering in too much detail because the patients are not all affected in the same way and it is not their role to consider every possible, individual case. Moreover, this book is also addressed to families in different countries with their own medical and medico-social structures and functioning. This is especially true regarding the availability of antiepileptic drugs and the possibilities of insertion in educative and rehabilitative structures. Thus, the authors encourage you to question your doctor to get other information related to your child’s particular situation.

This booklet also includes a glossary that is an essential part. It explains the medical terms you will hear. It will improve your dialogue with doctors.

All the authors have a personal experience of the relationship with families and children suffering from Dravet syndrome. We understand your practical and psychological difficulties. We want to help you as much as possible and we hope this booklet will be a good tool for that.

Charlotte Dravet