A collaboration between AKF and the Department of Veterans Affairs’ Epilepsy Centers of Excellence
Many of our brave servicemen and women are returning home from active duty with a new war to wage: a battle to control seizures and epilepsy. They were there for us…now it’s time for us to be there for them.
Returning veterans from Iraq and Afghanistan have been exposed to blasts from IEDs (improvised explosive devices), land mines, rocket-propelled grenades and suicide bombers. Blast exposure has left too many of these troops suffering with Traumatic Brain Injury (TBI).
TBI may result in an increased risk of developing epilepsy and/or seizures. Further, some types of seizures can be confused with the symptoms of post-traumatic stress disorder (PTSD).
Due to the common diagnosis of PTSD in Vietnam veterans and the poor recognition of epilepsy, unknown numbers of Vietnam veterans are also experiencing seizures.
Returning from war and reorienting to civilian life is challenging. Imagine our heroes with TBI, PTSD, amputation, blindness, and other physical and emotional wounds returning to seek medical help, counseling and job placement. When these men and women also have seizures (especially seizures without convulsion that may not be recognized as seizures by family, friends, or medical providers) the job of healing and re-integrating is far more difficult. Understanding the subtle differences between seizure types, and gaining insight into local community services is imperative. Becoming an active member of the greater epilepsy community can create a deepened feeling of self-worth and respect while increasing quality of life options.
The Department of Veterans Affairs recognized that immediate and sustaining support was needed and established Epilepsy Centers of Excellence for “Improving the health and wellbeing of Veteran patients with epilepsy and other seizure disorders through the integration of clinical care, research and education.” At this writing, there are 16 centers throughout the US. For more information and a complete list of centers, please visit www.epilepsy.va.gov.
Purple Day® Hospital Kit Program Continues in 2017
We are very grateful for the support we receive that allows us to send Purple Day® epilepsy awareness kits to hospitals throughout the US. Last year hundreds of kits went out with seizure first aid bookmarks, posters, flyers, and our signature scroll pens. Purple epilepsy awareness bracelets and purple-foiled candies complete the package each hospital, practice or clinic receives to help them create an information table at their facility. Each VA Epilepsy Center of Excellence receives a kit that clearly indicates how important their physicians feel about providing their patients with stigma-reducing tools to share within local communities. Epileptologists have embraced the opportunity to help in creating an accepting and helpful environment for persons with epilepsy to live, work, play and thrive.
Again, this year Sunovion Pharmaceuticals is supporting our Purple Day® Hospital Kit Program.
The Anita Kaufmann Foundation has established a program to specifically provide our veterans with the following support when they return to their homes and local communities:
Antwan Rice is a 34-year-old retired Army Veteran. During his last deployment in 2013 to Afghanistan, he was injured by an in-bound mortar round which landed approximately 10 meters in front of him. The blast wave from the impact blew through his body rendering him unconscious. He was taken to the nearest “Charlie MED” where they informed him that he had a Traumatic Brain Injury (TBI). Further testing revealed that the periods of unresponsiveness he was experiencing were, in fact, Absence Seizures and Simple Partial Epilepsy.
Antwan will tell you that at that very moment he thought my life was over. And, unfortunately, what followed was an additional diagnosis of PTSD. Mixtures of medications, weekly seizures and the loss of his driver’s license left him feeling isolated and helpless. But, after about a year, his neurologist found a medication regimen that worked.
Seizure free for a year now, Antwan tells us that he owes this success to the glory of God. He is ready, willing and able to lend his time and his voice to educating fellow servicemen and servicewomen about how to help a friend…and their family members…win this important battle, enjoy family and friends and pursue a rewarding career.
We have created unique seizure recognition and first aid posters as well as information sheets for our Veterans. These will be distributed free of charge to every US Veterans organization, and will be made available to our returning heroes and their families. PLEASE SHARE THEM!
In an effort to address the stigma of epilepsy and educate Veterans, their caregivers and the general public about living with epilepsy, the Epilepsy Centers of Excellence (ECoE), in partnership with the VHA Employee Education System, have developed a video series titled “Veterans and Epilepsy: Basic Training.” Each video in the series features a Veteran sharing his or her personal experiences and unique challenges balancing the medical, personal and social aspects associated with having recurring seizures. The goal of the video series is to promote public awareness of the impact of epilepsy in the lives of Veterans and to convey that these patients are able to live full, productive, successful lives.
Traumatic brain injury, or TBI, has been labeled the signature injury of the Global War on Terror. According to the Department of Defense, 333,169 U.S. military Servicemembers have been diagnosed with TBI since 2000, and the number is growing. In addition to symptoms such as memory problems, depression and post-traumatic stress disorder (PTSD), U.S. Servicemembers and Veterans with TBI are at greater risk for seizures and epilepsy. To meet the needs of these Veteran patients, VA created the ECoEs, located at 16 sites across the VA health care system and linked to from four regional centers. The ECoEs strive to ensure high-quality care to Veterans with epilepsy by providing clinical care, outreach, research, and education.
“I think receiving a diagnosis of epilepsy is a very emotionally turbulent experience for most of my patients. It is true that they do get some relief from finally having an answer, but the word ‘epilepsy’ has a great stigma attached to it” explains Manu Hegde, MD, PhD, epilepsy specialist and neurologist at the San Francisco VA Medical Center.
“There is a culture of stoicism in the military, which prevents Veterans with epilepsy from reaching out to get more information about their epilepsy. Hopefully these videos will show Veterans and all individuals living with epilepsy they are not alone” explains Stephanie Chen, epilepsy nurse practitioner with the San Francisco VA Medical Center.
The ECoE is releasing a video series, available on You Tube (https://www.youtube.com/playlist?list=PL3AQ_JVoBEyzDfAHEptumOPB-PFTH_ya-) and (https://youtu.be/yx45kHDoEqo). The first focuses on the diagnosis of epilepsy, and the second on Traumatic Brain Injury. The third focuses on an introduction to epilepsy and the Epilepsy Centers of Excellence. Subsequent videos will be released every few months over the next year and d include topics such as, epilepsy medications, social issues faced by individuals living with epilepsy, and seizure first aid.
If you or someone you know is a Veteran with seizures interested in seeking services at one of the Epilepsy Centers of Excellence, please speak with your local primary care provider or neurologist. Your healthcare provider will be able to determine if you might benefit from the services provided by the ECoE and assist you with scheduling an appointment.
The first snowfall of the season did not dampen the efforts of the MN VA ECoE and their First Annual Epilepsy Awareness Event. Kim Heckmann, APRN organized the event and invited epilepsy service providers and organizations from around the region to share information with Veterans and their families. Heads Up For Vets was represented by AKF Executive Director Debra Josephs. Dr. Stephen Holloway, a neurologist with the Minneapolis VA Medical Center, was on hand to meet with attendees and answer their many important question. We look forward to next year!
For more information or if you have questions about our Veterans Program, please contact Heads Up For Vets Program Director Ann Marie Bezuyen at 845-800-5158 or firstname.lastname@example.org.
There are many organizations around the US who are supporting our Veterans with epilepsy. One of the most prolific supporters is Eric Surles, Commander, VFW Post 6280, Adjutant, American Legion Post 99, in Salem, Missouri.
Please visit their website to follow the important work they are undertaking and join in if you can!