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 26th, 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