My heart is heavy with grief as I write this letter, but if I can save just one family from going through the hell my family has gone through this past month and half, then maybe our hearts can start to heal.
On June 27, our world was turned upside down. My beloved nephew Tory, 39, was found by his mother, her only son laying face down in his bed. He had died from SUDEP (sudden unexpected death from epilepsy). Ever hear of it? My guess is that you probably have not unless you have suffered the loss of a loved one from SUDEP. None of us in our family had ever heard of it either, and I have been a nurse for 26 years! In fact, Tory had never heard of it as the doctor he had seen never shared the possibility that this could affect my nephew. He never told him!
When asked by Tory’s sister if the doctor (not from Albert Lea) had told Tory that he was at high risk for SUDEP because he suffered with epilepsy, his reply was: “If they do what I tell them to do and take their medication, they will have no problem.” Tory stopped taking his medication because he didn’t like the way it made him feel irritable and mean. Maybe if the doctor had told him about the risk of SUDEP, he would have done things different. Maybe he would have told the doctor and been given a different medication to try. We will never know. He never got the chance!
One in 100 people have epilepsy, the neurological condition characterized by recurrent seizures. Approximately 1 in 1,000 people with epilepsy per year dies of SUDEP. Most will be found in their bed.
Sadly, only after his death did we learn of SUDEP. We were never told. This is unacceptable and I believe irresponsible on the doctors’ part to make the choice for us. So now we are left in shock, with anger and frustration searching for answers. Why didn’t we know about this? Was there something we could have done to prevent this tragedy? How can we stop another unnecessary death?
I wanted to share this letter to increase awareness of SUDEP. Please educate yourself and others on SUDEP by going online to any SUDEP sight. Talk to your doctor and ask questions about SUDEP. Don’t assume your doctor will automatically tell you. Tell your family, friends and neighbor that you know has seizures. It’s too late for our family. I pray it’s not too late for yours.