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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NAEC Epilepsy Finish Line Video 2017

Working with the CBS Community Partnership Division, NAEC developed a 30-second video designed to promote NAEC accredited epilepsy centers as providers of expert care for people with epilepsy and seizures. The 30-second video is appearing on TVs in 65 airports across the United States and Canada from November 20, 2017 – December 31, 2017, and is estimated to be viewed more than 30 million times. 

Success story by Dr. Kurukumbi

By Ruchelle Buenaventura 

After epilepsy surgery in 2015, George Rouse goes 2 years seizure free.

George Rouse goes 2 years seizure free after epilepsy surgery facilitated by Dr. Kurkumbi (from EFVA Professional Advisory Board) and his team at Inova Epilepsy Center!  

Check out WUSA9 interview here: http://www.wusa9.com/news/health/inova-family-health/family-health-transformative-epilepsy-treatment/491669553

Prior to any seizures, Rouse practiced law. However, after bashing his head on a bookcase, he gradually developed epilepsy. Over several years, his epilepsy progressively increased from several seizures a month to several times a day. Dr. Kurukumbi identified that the seizures were coming from the right side of his brain. Dr. Leiphart, epilepsy neurosurgeon at Inova dissected the affected area and completed the surgery. To this day, Rouse only has to take one AED and is seizure-free. 

If anyone is interested, there is an epilepsy support group at Inova in Falls Church, VA the 2nd Tuesday of every month. 

 

 

Epilepsy experts discuss life, programs, and more for children with epilepsy.

by Ruchelle Buenaventura 

Check out a panel of epilepsy experts from Children's National Medical Center. They discuss life for children living with epilepsy, support programs available at Children's National D.C. and Northern Virginia. Dr. Schreiber (Neurologist), Carrin Brandt (Family Therapist), and Dr. Levin (Emergency Medicine Specialist) speak about their experiences and involvement with epilepsy. November is National Epilepsy Awareness Month, it's time to #TalkAboutIt! 

Check out the original FB Live post here

There was a 25% increase in people living with epilepsy...how to normalize the stigma?

By Ruchelle Buenaventura 

In August 2017, the CDC released data that claims epilepsy rates are increasing. (See original paper here). In total, 3.4 million Americans were reported to have epilepsy, with Virginia taking up 2.47% of the national total. 

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What does this mean for Virginia?

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While 2.47% may seem like a smaller portion of the whole, the CDC reported a total of 84,100 Virginians to be living with epilepsy.  This is a 4,100 increase in the last 5 years from the priorly recorded 80,000 Virginians living with epilepsy.  NHIS data indicates of the rise in epilepsy due to population growth or other unknown factors. 

In Virginia, 73,800 adults and 11,000 children are living with epilepsy. Virginians should consider epilepsy as a normalized disorder, rather than a rare condition. While the prevalence of epilepsy growing, it is important to reduce the stigma against it. 

Normalize the stigma

1. Talk about epilepsy

A big part of increasing awareness is dialogue. Efficient dialogue creates room for questions, answers, and conversations that progress acceptance about epilepsy. Openly talking about epilepsy makes others more inclined to listen. Articulating one's thoughts about epilepsy also helps address concerns that may be bottled up inside. This helps others empathize to a point of understanding. 

2. Understand that epilepsy is a livable condition

Many epilepsy heroes live successful lives by being able to manage their epilepsy efficiently. From precautions with stress and diet, taking proper medication, and having friend/family support, patients are able to pursue normal lives. Epilepsy is a sacrifice, but acceptance is key to surviving with in. 

3. Accept epilepsy and add purpose to your life

Everyone has challenges they through in life, whether it is epilepsy or other life problems. Finding purpose in life, whether a passion, career, or family, can offer you ways to side-track epilepsy and focus on other aspects. Some may say, "Yes, I have epilepsy, but I am still looking forward to X." This change of mindset may be difficult at first, but it has long-term effects. 

4. Help yourself

You are strong for living with epilepsy. Successful epilepsy heroes tend to practice self-care. Practicing self-care reduces stress and promotes gratitude. Self-care is important because it affects your overall wellness. Having good wellness helps those with epilepsy manage stress, have better relationships with others, and improve outlook in life. 

5. Join the community

There is no better support than speaking with others who know what you are going through. Everyone is at different stages of their lives, epilepsy diagnosis, and etc. However, the epilepsy community is part of this fight together. The Epilepsy Foundation of Virginia has a "Virginia Network", where volunteers who live with epilepsy provides the public with their contact information to be a voice of support to those who need them. Check out our calendar and attend events to familiarize yourself with the EFVA community! For those interested, support groups meet once a month in different regions of Virginia.

If you have any further questions, please contact srb3m@virginia.edu or rb8wx@virginia.edu