We are writing to see if you would be willing to take a few minutes to write down what it is like to live with non-epileptic seizures. In particular, we are interested in your descriptions of what you experience before, during and after your non-epileptic seizures and how your non-epileptic seizures affect your day-to-day life.
We are interested in your story told in your own words and you can write about anything you feel is important. You could write about how the non-epileptic seizures have affected your relationships with others such as family members, friends, neighbours and work colleagues, or how your family, friends, doctors, nurses, therapists, paramedics and even complete strangers have reacted to your seizures. Have the seizures had an impact on your independence and financial stability, your work life and career? How have the seizures affected the way you feel about yourself and about how others see you? You may want to write about your healthcare experiences, how was the condition first explained to you, what treatments have you found helpful and is there anything that hasn’t helped, and if so why? If you have experienced non-epileptic seizures for a long time you may want to write about how your attitudes and feelings towards the seizures have changed, how did you feel in the beginning when you first experienced your symptoms, when you received the diagnosis and how do you feel now? You could write about how you cope and manage with your seizures, what have you personally found helpful?
Some people have been told by their doctor that they have both epileptic seizures and non-epileptic seizures. If this applies to you, you may also want to write about how your non-epileptic seizures are different from your epileptic seizures (if they are), how they feel differently when they happen (if they do) and how they affect your life differently (if they do).
We are also interested in other people’s experiences of your non-epileptic seizures. It would be great if you ask your spouse, children, close friend or relative/s to write about how your non-epileptic seizures affect them. However, don’t worry if you do not know anyone else you might ask to contribute. We would be very happy with your contribution on it’s own.
Your writings can be as long and detailed, or as short and brief as you feel necessary. We are interested in accounts from those who currently experience or who have previously experienced non-epileptic seizures.
Your writings will be used for educational purposes, for instance by helping others who may have just developed non-epileptic seizures to cope better. Oxford University Press may choose to publish the writings in a book as part of the Brainstorms series, which will be freely available for sale. You can have a look at other titles that have already been published in the series on Amazon or on the Oxford University Press website.
If your writings are included in the book you will receive a free copy. We are very keen to keep your personal details confidential. To ensure this, we will not link your name with your particular contribution to the book. However, if you would like, we can acknowledge your contribution in a specific section of the book along with the names of others who have contributed. The book will be edited by Markus Reuber, Gregg Rawlings and Steven Schachter.
If you (and/or your family and friends) are willing to take part in this project, could you please complete the consent form and diagnosis forms, and enter your writings in the spaces provided below.
If you would like further information before you send us your writing you can also contact Gregg Rawlings, Academic Neurology Unit, Royal Hallamshire Hospital, Glossop Road, Sheffield, S10 2JF, email@example.com.
Thank you very much. Kind Regards,
Professor Markus Reuber Professor Steven SchachterHonorary Consultant Neurologist Professor of Neurology
Gregg RawlingsPhD Student
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