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

EFVA 2017-2018 Calendar - USE A HELMET, PREVENT EPILEPSY

By Ruchelle Buenaventura

Check out our USE A HELMET, PREVENT EPILEPSY campaign in EFVA's 2017-2018 Calendar! Thanks to all submissions and congratulations to all of our winners. These calendars are distributed all over Virginia for educational purposes.

AUGUST 2017: MCKENZIE BRILLHART, KIPPS ELEMENTARY SCHOOL, BLACKSBURG
SEPTEMBER 2017: SAGE BLAIR, DESMOND T. DOSS ELEMENTARY SCHOOL, LYNCHBURG
OCTOBER 2017: GENEVIEVE WATKINS, M. MAURY ELEMENTARY SCHOOL, ALEXANDRIA
NOVEMBER 2017: ETHAN STUMP, CHARLES BARRETT ELEMENTARY SCHOOL, ALEXANDRIA
DECEMBER 2017: ISABELLA FLETT, CLARA BYRD BAKER ELEMENTARY SCHOOL, WILLIAMSBURG
JANUARY 2017: ELODIE ANDERSON, CHARLES BARRETT ELEMENTARY SCHOOL, ALEXANDRIA
FEBRUARY 2017: TAKIYAH HARRIS, CHASE CITY ELEMENTARY SCHOOL, CHASE CITY
MARCH 2018: CECILY BOYLE, CHARLES BARRETT ELEMENTARY SCHOOL, ALEXANDRIA
APRIL 2018: MINH NGUYEN, KIPPS ELEMENTARY SCHOOL, BLACKSBURG
MAY 2018: LEENA LAHRACH, CLARA BYRD BAKER ELEMENTARY SCHOOL, WILLIAMSBURG
JUNE 2018: ELSA IKNER, CLARA BYRD BAKER ELEMENTARY SCHOOL, WILLIAMSBURG
JULY 2018: OLIVIA LEIGH LONGOBARDI, M. MAURY ELEMENTARY SCHOOL, ALEXANDRIA



 

In honor of 3-year-old brother with epilepsy, 9-year-old girl hosts "Lemonade by Haley"

by Ruchelle Buenaventura 

LEMONADEBYHALEY
Haley Walker, 9 years old 

Haley Walker, 9 years old 

This September, 9-year-old Haley Walker of Palmyra, VA is having a lemonade stand in honor of her 3-year-old brother with epilepsy.

At first, Haley was afraid of her brother's seizures. She was scared that something would happen to him, but later understood that it is a livable condition. As she advocates for her brother, she wishes to raise awareness for epilepsy and money for the Epilepsy Foundation of Virginia (EFVA). 

She will sell lemonade, water and self-baked cookies at the Palmyra Volunteer Fire Company, who is hosting a bake and yard sale on September 23rd from 8 AM -1 PM at 14567 James Madison Highway, Palmyra, VA. All funds raised will be donated to the Epilepsy Foundation of Virginia in her brother's honor.

Thank you Haley for caring about your family's epilepsy hero!  

If you would like to donate supplies to Haley, she is in need of bottled water, frozen or bottled lemonade mix, and cups, contact us at srb3m@virginia.edu to connect you with her family! 

Unable to attend Haley's Lemonade Stand? Donate here

See Haley's letter here: