Guest Post: One Risk to Know About, One Risk to Talk About

Do you know someone with epilepsy?  Do you know someone with a seizure disorder?  Know a person who has had just one seizure?  If so, learn about this condition and you can save a life.

It is called Sudden Unexpected Death in Epilepsy or SUDEP and it is a fatal complication of seizures that I was never made aware of.

My husband, Jeff, died on February 26^th, 2012 at the age of 42 from SUDEP.  The short story is this: Jeff had his first tonic-clonic seizure (or grand mal seizure) in his sleep in January.  We followed up with doctor visits, CAT scans, MRI’s, EEG’s, you name it.  Nothing showed a reason for the sudden seizure and we were advised that it could be a “one time event”.  However, in February, Jeff had a second seizure.  In the hours afterwards he appeared to recover then voiced that he was tired and laid down for a nap.  He died in his sleep.

I had never heard of SUDEP.  Most families I have met that have lost a loved one to SUDEP had never heard of the risk.  I was warned to not let Jeff drive, he couldn’t go swimming, or climb a ladder.  But I was never told to monitor him in his sleep.  I was not told that people with seizures can die from a condition eerily similar to Sudden Infant Death Syndrome (SIDS).

If seizures effects you or someone you know I want you to know about this risk.  I want you to educate yourself about SUDEP and preventive measures.  Just as new parents are told of SIDS, people with seizures should be told of SUDEP.

There is no known cure-all way to prevent SUDEP. Currently, the best course of treatment is to encourage and engage in these preventative strategies:

§  advocate for increased awareness by the public and the medical community;

§  maximum seizure control via strict treatment adherence;

§  regular physical activity and lifestyle modifications that reduce stress and seizure activity;

§  patients should regularly visit with their doctor especially if their convulsive seizures are not completely controlled;

§  consider the use of alternative resources such as monitoring devices that detect certain seizures and can alert caretakers and enable early intervention;

§  consider supervision or monitoring during sleep hours to identify seizure activity;

§  ensure that family members and caretakers have knowledge of seizure first aid and of emergency resuscitation measures including CPR and defibrillator use;

• inquire about and advocate for research that enables a better understanding of the mechanisms of SUDEP. (The Danny Did Foundation, http://www.dannydid.org/sudep/)

Please join us in Prince William County on September 22, 2012 for a 5K in honor of Jeff Beaupre.  I have partnered with the Chelsea Hutchinson Foundation (http://www.chelseahutchisonfoundation.org/) and the Danny Did Foundation (, http://www.dannydid.org/) to raise awareness of SUDEP.  Funds from the September 22, 2013 5K will go to the Chelsea Hutchinson Foundation to be used to provide sleep monitors and seizure response dogs.  Race information can be found at: http://www.runningguru.com/EventInformation.asp?eID=6074

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About the Author:   “Jeff’s Wife” has a blog detailing her family’s struggle with SUDEP and grief at http://survivingaftersudep.blogspot.com