SUDEP
Sudden, unexpected death of someone with epilepsy who is other wise their healthy.
Today I am going to write about this as I know it needs to be spoken about and really not much is know about it. In fact even till this day there are doctors who will tell you that this is not true and you cant just die due to having epilepsy. Sorry to be the bearer of bad news but yes you can.
I have know this since before Matt even had epilepsy as one of our acquaintances had died in his sleep one night, that was all there was to it. He had, had epilepsy for awhile and had listened to the doctors and taken all the medication they prescribed and none of them worked and he was still having many seizures regularly and one night he went to sleep and never woke up.
I remember hearing this and being very saddened this is such a sad illness, it takes so much from you including having the chance to die in your sleep with no other cause.
At the time which was over 30 years ago I was shocked that this could ever happen, today I am even more shocked they really are no closer to finding out why it happens and what you can do about it.
So what is SUDEP? As explained on the first line above it is the unexpected death of someone who has epilepsy who is their healthy self in other words no other signs have caused the death, there is no injury, no over does, no other medical issues happening, nothing else happened when they went to sleep that caused the death. When I think about this I am reminded of SIDS when an infant dies unexpectedly during its sleep so much research has been done on this and they have found out a lot about this and so many fewer deaths have occurred thank goodness. SUDEP happens during sleep so it is even difficult to predict what time death would occur.
Maybe because the numbers of death is not so high that it isn't being studied as much, how ever maybe the low count is because they are not studying it. It states that 1 in every 1000 adults and 1 in every 4000 children will die of SUDEP to me this is 1 death to many. Now this does not include the deaths cause by other epilepsy related issues such as injury, over dose, to many seizures, suicide or other related issues. It is only for unexplained, unexpected death.
So who is more likely to die from SUDEP? Anyone with epilepsy especially those who still are unable to control their seizures although it seems people with absence or myoclonic seizures are not known to have increased risk for sudden death.
What causes SUDEP is unknown although they are looking at many area's. There is more answer that need to be asked and answered unfortunately not enough is known about it. Check out SUDEP FAQ's here
For me all of the information that I learn helps me, it helps me know that every moment spent with Matt is important and every morning I am grateful he wakes up looking for breakfast, I know how important it is to get Matt 100 % seizure free. Everything we try is getting us closer and closer it is truly amazing and soon we are hoping to be 100 % seizure free. But yes every seizure is not good.
You can help us, help Matt by donating on our home page on the donate button. Or clink on this button. Feel free to share everyone needs to be aware of this. SUDEP is an important discussion to have even one death is to many.
