Wednesday, July 12th is Virginia SUDEP Awareness Day, and the Epilepsy Foundation of Virginia received a sizeable grant from a donor to train neurologists about SUDEP (Sudden Unexpected Death in Epilepsy).
SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. Each year, 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled, the risk of SUDEP increases to more than 1 out of 150.
EFVA’s SUDEP Grant will allow active SUDEP parents, neurologists, and EFVA staff to discuss SUDEP with state-wide communities who lack knowledge of the mortality. Most neurologists do not discuss SUDEP and epilepsy mortalities with their patients, thinking that SUDEP risk is low. However, with 80,000 Virginians with epilepsy, it is necessary that neurologists inform all of their patients about this fatality.
An EFVA client, Brandi, emphasized the need for this grant after coming home from work to her daughter’s death from SUDEP preceding a nap. SUDEP patients are often found lying face down in bed with no apparent seizure close to time of death. No one is sure about the cause of death in SUDEP, but researchers think it may be caused by impaired breathing, fluid in lungs, or irregular heart rhythm. There is also a high correlation with SUDEP and ongoing generalized tonic-clonic seizures (GTCS).
Risk for SUDEP can be decreased by nocturnal supervision (listening device) and finding the best seizure management strategies for patients. Seizures are controlled by taking proper medication and following neurologist precautions.
EFVA has spent considerable time with parents who lost their child from SUDEP and the grief is deep. As Virginia SUDEP Awareness Day is commemorated on July 12th, we hope to honor the lives lose by SUDEP by increasing awareness and supporting active SUDEP duties in the community.
National SUDEP Awareness Day was officially recognized by the Virginia General Assembly in House Joint Resolution 98 in 2014 after 19-year-old Khristin Kyllo lost her life to SUDEP.
The Epilepsy Foundation of Virginia leads the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. For more information about donations or SUDEP-related events, visit www.epilepsyva.com or contact us at (434) 924-8669.
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