Our daughter Jane died from SUDEP & possibly from ours and her ignorance. Nearly half of all SUDEP deaths are avoidable. Stay Alive - Read On.

Wednesday, 29 February 2012

Understanding Jane's Death

Epilepsy Society
Image via Wikipedia
Jane lived relatively happily with epilepsy.  Perhaps happily is the wrong word, but she certainly did not let it stop her.  Jane lived life to the full, whether that was embracing live music or travelling the world.

But epilepsy did stop her.  Jane died directly from epilepsy.  This kind of death is often called SUDEP.  The U stands for various things but one thing it can stand for is unwitnessed.  Jane died alone in the shower one morning while preparing for work.  Another word the U can stand for is Unexpected and Jane's death came as a total surprise to us, to all her friends and all her family.  Also it may be interpreted as Unexplained, which refers to the lack of effective research into SUDEP, something that is beginning to change.

Another, possibly controversial use of the letter U might be Unnecessary.  Jane's death might have been avoided.  The best protection against SUDEP seems to be effective medication.  Well Jane had plenty of medication and as far as we know took it regularly and reliably.  But....

And so we come to the last U - trying to Understand Jane's death.  The reason is to help ensure that as few families and friends suffer as possible.  Sadly up to 500 families and friends each year are at risk.

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