JULY 12, 2018: VIRGINIA SUDEP AWARENESS DAY

by Ruchelle Buenaventura

VIRGINIA - July 12 is Virginia's SUDEP Awareness Day. SUDEP stands for sudden unexpected death in epilepsy. House Joint Resolution 98, established in 2014, declared July 12 as Virginia SUDEP Awareness Day in memory of Khristin Kyllo of Vienna, VA, who lost her life to SUDEP in 2011. Khristin's story is just one of many. Today, we remember all of our epilepsy heroes who lost their lives to SUDEP. 

In Virginia, there are an estimated 84,800 people living with epilepsy. According to the Centers for Disease Control and Prevention, the risk for SUDEP affects 1 in 1,000 people living with epilepsy. For those with uncontrolled seizures, this risk increases to 1 in 150. SUDEP has a higher risk than Sudden Infant Death Syndrome (SIDS). 

What happens? 

The person with epilepsy is often found lying face down in bed, often without appearing to have had a convulsive seizure. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding. Others have suffered from cardiac arrest.

Awareness

In healthcare, it has been a rising problem when neurologists fail to inform their patients of the risks of SUDEP due to low risks. While the risk of 1 in 1,000 may seem like a low number, it is important to keep everyone informed. Many families affected by SUDEP say that they wish that they were informed of its possibilities. Last week, country singer Eric Church's brother, Brandon Church, suffered from multiple seizures before his death. For others, prevalence of seizures are not as evident. 

This past year, the Epilepsy Foundation of Virginia (EFVA) has taken the initiative to train neurologists about SUDEP and their need to tell patients. Thanks to the G. Foundation, the SUDEP Institute, physicians on our Professional Advisory Board and others, EFVA has had successful SUDEP Grand Rounds lectures. Today, we have trained over 290 Virginia neurologists and continuing to expand in our reach. EFVA is also aiming to have SUDEP represented in legislation. Our mission is for everyone with epilepsy to understand SUDEP and the risks involved. 

We encourage everyone to share information about epilepsy, SUDEP, and its risks. For more information, check out Epilepsy Foundation's SUDEP overview here

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