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SUDEP

Mon, 02/27/2006 - 08:19
I just recieved a book titled " Sudden Unexplained Death in Epilepsy", A global conversation. I am happy that there is finally a book available about this subject ! Empowering the global community talks about this web site. I was also delighted to see my story in this section. I know that we are anonymous on the internet, but I know that this is my story, a mother lost her eighteen year old daughter. I can not express enough that by reading this in the book has helped my have some more closure in dealing with her death. This book is a milestone in getting the message out about SUDEP. The only source of information I have found in on the internet. SUDEP should not be a taboo subject for the medical professionals, it should be talked about. I lost my daughter from SUDEP without a clue about it until she passed. I know that I probably could not have changed the events, but I would have been informed about the possibility. Thank you for promoting SUDEP in this book, Carol

Comments

Re: SUDEP

Submitted by Anonymous on Mon, 2006-02-27 - 11:01
Hi Carol, Thanks go to you for writing your story! This is a great resource that hopefully will get the conversation going more openly. I'm glad you found it helpful. I think sometimes people worry that by talking about it, people will be upset - however, your comments show that being open is really what is needed. Thank you again for all that you do, Epi_help

Re: Re: SUDEP

Submitted by guitarmomma on Mon, 2006-02-27 - 15:07
The other communities are slowly coming around. Thanks so much for sharing your story. This needs to be an issue talked openly about!! latest figures are that 25,000-40,000 people die each year of SUDEP. There are a couple of support groups for bereaved as well...... http://www.sudep.org/ http://www.epilepsycalgary.com/sudden.html http://www.efa.org/epilepsyusa/silent.cfm There is also a SUDEP forum at EFA..... Thanks to all who share their painful stories....you have all taught so many! Keep it up....

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