Sudden Death Unexplained Death In Epilepsy
question most frequently asked of us is " how did Gary die " and
it is with this in mind I write this page.
Please know I do not claim to be an expert
on the subject matter I would say to all who live with epilepsy or are
worried in any way about the subject to seek expert medical advise and the services
of trained councilors who know how best to deal w
ith this subject.
ith this subject.
I have written the words in Big print for people who have not heard of SUDEP and certainly three years we did not know the least thing about it. After Gary died we spoke to a doctor in our local hospital. We had to explain the meaning of SUDEP to him.
SUDEP is an acronym of Sudden Unexplained Death In Epilepsy and up to quite recent years very little was known about SUDEP. We do know it's what caused Gary's passing. Epilepsy deaths come from many different accidents, or from status epilepticus, where a person suffers prolonged seizures, sometimes this type of seizure can become life threatening.
A person dies of SUDEP where a person with epilepsy dies suddenly and no other causes of death are revealed. A lot of mystery still surrounds it by the very nature of Epilepsy it is not a subject readily discussed. Most would see it as a hidden condition even though in the U.k. more than 300,000 are affected and official figures report about 1000 people die as a result of Epilepsy of these approximately 500 are as a result of SUDEP. In 1910 it was reported that 19% from a cohort of people with epilepsy were sudden and unexpected, and still today little is known why people die this way.
Gary's death certificate came to us needless to say it had no mention of
SUDEP and yet it is what causes the death of so many as we have come to
Our local paper did an article on Gary and how he passed. We agreed to this article because after three years we felt willing and able to highlight publicly how Gary died, to tell people about SUDEP. Our message for parents of children who have suffered a seizure or seizures is to ask questions about every aspect of their child's illness and to ask that question we forget to ask " Can you die from epilepsy ". We ask of the medical professions to tell people the risks involved that a person can die from epilepsy, but more importantly you can be at risk of SUDEP if you have seizures. I know that this is a contentious issue but it need not be and should not be. From parents point of view who have lost a child through been spared any anxiety and worry about the condition of epilepsy is a price far to great to pay.
" If only
we had known we would have made changes, we may not have been able to save
at least he would not have died alone".
Perhaps one of the hardest thing's we had to accept as Gary's Mom and Dad was the sense " we had let our big boy down we were simply not there for him". Since talking with people from organizations such as " EPILEPSY BEREAVED", we have come to learn that in a lot of cases even with medical help sadly the people can still die.
SUDEP continues to be made known very slowly for many reasons, doctors, carers, patients and their families encourage the idea that people with epilepsy can live full and independent lives, free of the unwarranted stigma. And yes that is the way it is for most. However only when all the facts are known and discussed can it be truthfully said that a person living with epilepsy are no longer living in the shadow of this condition.
We went into a lot of painful detail about the morning Christine found Gary and the aftermath of our struggle with grief. One of the issues for us when Gary died was the lack of any information we as parents of a child who had suffered a seizure were given. We were told a person can have one or two seizures and continue to live a normal life. I hope all doctors and medical staff who issue this type of statement correct it to include the possibility of SUDEP and if not the possibility the probability as supported by so much evidence.
As I write this piece it is National Epilepsy Week in England 18th to 20th May 2002. A memorial service was held today for all those who have passed it is with deep regrets we could not attend that service. Through our grief we have learned kindness and understanding from other parents who have lost their children through Epilepsy and it is with their help we have come to know what happened to Gary could not be helped. Gary died at the age of fourteen years on 22May 1999 and yet we feel he has achieved so much in such a short space of time. A Life such as Gary's cannot be measured in years but by the number of hearts he has touched. Gary still lives on in their hearts and he continues to still play an important role in all our lives. I have included in our links page further websites with information on Epilepsy and SUDEP.
It is only through discussion and highlighting the issue will more research be done.
For more information on SUDEP and Epilepsy related matters visit our links page
I have written
over a thousand times Gary we miss you dearly and you shall never be
forgotten for each person who dies there has to be a reason we shall
continue that search.
FOR MORE INFORMATION ON EPILEPSY RELATED MATTERS