Dravet Syndrome UK’s ‘Family Guide to Dravet Syndrome’ is an essential 68 page guide is aimed at parents and carers of Dravet patients to help guide them through the Dravet journey.
The book was a culmination of a year’s hard work, with guidance and advice from two of the charity’s Professional Advisors; Professor Sanjay Sisodiya and Honorary Clinical Associate Professor Sameer Zuberi.
The book contains medical information on seizures, as well as the co-morbid conditions that many Dravet patients face. It also contains information on schooling, respite and many other issues faced by families who are caring for someone diagnosed with the condition. In September 2015 the Guide was updated to include a much-needed and often requested section on Transition, that difficult period between childhood and adulthood.
Case studies are featured throughout the book, which readers will no doubt be able to identify with. Huge thanks goes to all the families who submitted case studies to be used.
All members receive one free copy of the guide when registering with the charity. Additional copies can be purchased at a cost of £6.50 each (or £12.00 for two copies). The book can be ordered by emailing firstname.lastname@example.org.
The trustees of Dravet Syndrome UK worked extremely hard on both securing funding for this publication and working on the content. The team hope that it provides families with relevant information on their child’s condition allowing them to make informed decisions as they work their way through the roller coaster ride that is Dravet syndrome.