Death can change everything – priorities, perceptions, abilities, view of the world, view of ourselves, relationships and so on. Sudden death brings with it the added dimensions of being unexpected, untimely and sometimes traumatic. The shock of the death can also be exacerbated because the family had not been told of any risk – or even told there was no risk. Research commissioned by Epilepsy Bereaved from the College of Health with bereaved relatives (Kennelly & Riesel 2002) reveals the emotional impact on the family ranging from shock and devastation, to guilt, anger, difficulty accepting the death, and loneliness. The aim of the study was to review health services and services for the investigation of death from relatives’ and carers’ perspectives to highlight issues that they themselves had identified as important in order to make recomendations on how the needs of people with epilepsy and their carers before and after death can be met in the future. “I think the ignorance of not ever thinking that it could result in death is the biggest shock.”
Once again in California, those in the state with any kind of experience and/or knowledge of juvenile justice, are trying to persuade California lawmakers to please, please, please pass a law that gives kids sentenced to prison for life a chance—just a chance, no kind of guarantee—to one day make the case that they are worthy of parole. So far, as was true last year and the year before, nearly all the Republicans and far too many spineless Democrats, are unwilling to pass the thing. Thus SB9—as the bill is numbered—still is a few votes shy of being able to pass. And while advocates are not giving up, the fact that our supposedly liberal state cannot pass this watered down bill is discouraging.
Black boy born in 2001 has a one in three chance of going to prison in his lifetime and a Latino boy a one in six chance of the same fate. The U.S. has the highest incarceration rate in the world: 7.1 million adult residents. One in 33 are under some
form of correctional supervision, including prison, jail, probation, or parole.
Please share the link, and let's spread awareness. Keep a look out for fundraising events!
Gemma Ray was a 17 year old local girl who passed away on the 2nd of November 2011, just two days before her 18th birthday and was 19 weeks pregnant with a baby boy (whom she was going to name Daniel). She died of a sudden Unexpected Death in Epilepsy, (SUDEP) and we as a charity are raising money for research into SUDEP as no-one really knows why it happens or what really causes this to happen, yet approximately three people a day die from Epilepsy.
Practice parameter: evaluating an apparent unprovoked first seizure in adults (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology and the American Epilepsy ...
Gemma’s Ray Of Hope In association with Running4Gem
Raising Epilepsy awareness and funding research into SUDEP
(Sudden unexpected death in Epilepsy)
Gemma Ray was a 17 year old local girl who passed away on the 2nd of November 2011 just two days before her 18th birthday and was 19 weeks pregnant with a baby boy (whom she was going to name Daniel). She died of a sudden Unexpected Death in Epilepsy, (SUDEP) and we as a charity are raising money for research into SUDEP as no-one really knows why it happens or what really causes this to happen, yet approximately three people a day die from Epilepsy.
Our aim as a charity is to raise money to fund research into finding out why this happens and finding a way to prevent it, whilst at the same time raise awareness about Epilepsy and SUDEP if we as a charity can make somebody aware which helps save just one life then it has to be worth it.
The aim of the charity is to focus on the Staffordshire area which is Gemma’s home county, although ultimately our goal would be to make this a national awareness,there are several fundraising events taking place in the next few months with many more planned throughout the next year.
I find myself sickened by the charges pending against 13-year-old Cristian Fernandez. I am outraged that this child has been thrown into the criminal justice system and, hence, faces charges that carry a possible sentence of life without parole.
I'm thinking now of my being part of the Cause on Facebook that is called "Turn Facebook Purple For Epilepsy Awareness." Of course, turning a site a certain color is not going to provide any practical help for the problem of ...
On January 13, 2011, A&E launched the “Beyond Scared Straight” program series earning it the highest ratings in the station’s history. With 3.8 million views, Bob DeBitetto, President and General Manager of A&E Network and BIO Channel, says that, "We could not be more proud to have undertaken this groundbreaking series and the audience response is extremely rewarding. Beyond Scared Straight' truly exemplifies our unique brand of highly engaging programming with a focus on excellent storytelling and first-class auspices."
Abstract Background: The National Institute for Clinical Excellence in the UK has issued guidelines stating all individuals with epilepsy be given information about sudden unexpected death in epilepsy (SUDEP).
Methods: We conducted a survey of current practice among UK neurologists, using a questionnaire sent to all practising neurologists in the UK listed on the Association of British Neurologists database, asking under what circumstances they told patients about SUDEP.
Results: Of the validated respondents, 5% discussed SUDEP with all patients, 26% with a majority, 61% with a few, and 7.5% with none. The commonest reasons for SUDEP to be discussed were the patient asking about it and the neurologist counselling people with known risk factors for SUDEP.
Conclusions: The variation we found, although not necessarily in tune with the guidelines, reflects the variation in patients’ need for knowledge about their condition.
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