The aim of this booklet is to provide easily understandable and useful information for families and relatives of patients suffering from Dravet syndrome. We, as health care professionals, tried to give, in a brief document, a global overview on what is Dravet syndrome, giving explanations on the challenges that will have to be overcome daily and throughout life.
In our connected world with a full access to knowledge it has become difficult to find reliable accurate information. Even when uncovered, these documents are usually coming from physicians or scientists with a not so easily understandable language, or without proper explanation. Therefore, they may lead to misunderstandings.
We did our best to answer 20 of the first questions that you might ask yourselves when hearing about Dravet syndrome. You will also find practical information you can pass on to family members or to relatives. We tried to make a user-friendly document which can be read from cover to cover or jumping from one question to the other.
As we had to review all possible features regarding the disease, you might find information that is not useful or relevant for your child or in your country. Reading this booklet will make you realise that each Dravet child is unique.
We hope that this booklet will give you answers to questions arising either upon the announcement of the diagnosis or later on.
However, we know that it will also leave some unanswered matters. For these, your child’s doctor will remain your best contact, providing you all the information you need. We also included a glossary to help you with medical terms.
We are pediatric neurologists from all across Europe. We are all specialised in epilepsy and are actively working with Dravet syndrome children. Our aim was to share our local experience both from a clinical point of view as well as in terms of management of this rare condition.