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Seizure stars: Pat Gibson

Patricia Gibson, MSSW, DHL, ACSW is a true inspiration to the epilepsy and seizure disorders community having dedicated herself for decades to improving the lives of those living with seizure disorders in a multitude of ways.  We sat down with her to hear about how she came to work in the field of epilepsy, to hear all about everything she has been doing to advance epilepsy over the years, and especially, what her plans are for the future. 

Pat Gibson is an Associate professor in the Department of Neurology at Wake Forest University School of Medicine where she provides individual, group and family counseling and is actively involved in medical student, nursing, patient and community education. She also serves as Director of the Epilepsy Information Service, a nationwide telephone information line for patients and their family members in operation since 1979.  Ms. Gibson received her Master's of Science in psychiatric social work degree from the University of Tennessee. In 2012 she was awarded an honorary Doctorate in Humane Letters from Queens University in Charlotte, NC.  Ms. Gibson has organized and conducted numerous state, regional, and more than 40 national and international conferences on epilepsy.  She set up the Epilepsy Medication Fund for the state of North Carolina in 1987 and conducts numerous fundraisers for this Fund.  She has received national and international awards for her work to improve the care of those with epilepsy. She presently also serves as the volunteer Executive Director of the Epilepsy Alliance  North Carolina. 

How did epilepsy come into your life?

Quite accidentally, like many folks I knew nothing about epilepsy as I completed my training as a psychiatric social worker. My first job was as a consultant with the state health department of Virginia. I was assigned to attend a number of regional clinics--rheumatic fever, family planning, defective hearing, child psychiatry and an epilepsy clinic held quarterly by physicians from the U. of Virginia headed by Dr. Fritz Dreifuss. I enjoyed all of the patients at the various clinics but I found myself drawn to the children with epilepsy, especially those whose seizures were uncontrolled and was appalled at the stigma that was attached to this diagnosis. While I did not know a lot about epilepsy at that time, I did recognize that it was a "medical" problem and should be understood and treated as such. I have always been drawn to the "underdogs' that is what pulls many of us into the profession of social work as it is not known for being a glamorous, high status or well- paid profession. Early on, I found myself trying to come up with strategies to help my young patients with epilepsy protect themselves from this stigma and not to incorporate it into their perception of themselves. (I have a story about this with one of the first patients I saw). Later, after I had I left to direct the Social Services section of the local Mental Health Center, I was contacted by Dr. Dreifuss asking if I would move to North Carolina and help set up a "comprehensive epilepsy program". This was a new concept that he and Dr. Kiffin Penry, then head of the Epilepsy Section at NIH, were promoting--the belief that the person with epilepsy needed to be treated with more than just a prescription but rather needed a full array of services treating the "whole" person. The treatment team should include, not just the neurologist, but also psychiatrists, psychologists, social workers, pharmacologists, vocational rehabilitation specialists, education consultant and others.  Dr. Dreifuss had been awarded one of the original grants to develop such a center and wanted to develop a more regional center involving North Carolina and eastern Tennessee. I came to Wake Forest School of Medicine in 1976 to work on this. 

As a healthcare professional, how has it been to work with people with epilepsy (PWE)?

I honestly cannot imagine a more rewarding, fulfilling career. It has been amazing to see during my lifetime how far we have come in our options for treatment and even cures of epilepsy.

You have been such an incredible presence in the epilepsy community and in the professional world through your many educational endeavors.  Please tell us about those.

I found myself early on being in a position of working with two of the leading experts in the world and I learned information that could possibly help patients even before it was published. This was long before the time of the internet and most patients had little access to accurate, up to date information on epilepsy. Soon after I came to Wake Forest, I decided that I would open a toll-free line for NC that anyone could call and ask questions about epilepsy. You wouldn't even have to tell me your name. Stigma surrounging epilepsy was much worse then and I was sensitive to that and wanted folks to feel comfortable asking about anything.  Not long after it opened the telephone company came and worked on our phones and accidentally opened us up to the whole country. The Epilepsy Information Service has been nationwide since. I even get calls from other countries although we do no publicity. When I first started working in the clinic at Wake Forest, I realized that I could spend time teaching the patient and family about epilepsy but that education could be undone by a grandparent or even a teacher who didn't understand, so early on I began developing epilepsy workshops across the state for families and community professionals. One year I conducted 90 workshops just for teachers alone. Following that effort, I received calls from doctors at other medical centers saying that kids with seizures had been recognized by teachers and referred to them.  I began holding conferences at Graylyn Conference center, owned by Wake Forest, for nurses and doctors and a number of these were international. One doctor from Denmark brought all of her epilepsy nurses there for training.  I had so many calls from folks requesting training that I decided to set up a conference at the American Epilepsy Society annual meeting called "Advances in the Management of Epilepsy" aimed at those who work on the frontlines of care for those with epilepsy. This has been going for 32 years, in addition to a Pediatric Epilepsy Symposium for doctors and nurse practitioners/PA's I have held for the past 22 years in Asheville, NC. I also did a 20-year project with 4th grade students aimed at preventing stigma. I continue to teach a variety of professionals and other groups upon request in my state and others.

You work closely with the Epilepsy Alliance of America.  This is a relatively new group. Could you tell us about it and how does it differ from the Epilepsy Foundation? 

Yes, the Epilepsy Alliance America is a network of epilepsy groups who were formerly affiliates of the Epilepsy Foundation. These groups are interested in providing direct, hand-on services to those with epilepsy. I have documented for years the primary needs of those with epilepsy in our state through the more than half million calls to the Epilepsy Information Service. For instance, after the first 5,000 calls, I documented that one of the biggest needs in our state was the need for assistance with obtaining seizure medicine especially for the working poor. I began working on setting up a medication assistance program for the state and this has been in operation since 1987. The Epilepsy Alliance North Carolina has been one of the biggest supporters of this program. Another example is the special van that was purchased by the Alliance for a family with two severely handicapped children. The mission of the Epilepsy Alliance America is dedicated to supporting those impacted by epilepsy in local communities by confronting the spectrum of challenges created by seizures. The services vary from one Alliance group to another but it is very direct services focused, while also providing education and support for research.

What plans and projects are you working on for the future?  

We have a number of projects we are working on, one of these is to set up basketball camps across our state for kids with epilepsy. We are most fortunate to have Greg Brittenham, formerly with the New York Knicks, working with us as a volunteer. He is wonderfully inspiring and our work with young people both as participants of the camp but also junior counselors has been most rewarding. It is all about teaching team work, respect for each other, and how to be our 'best selves".  

One of the concerns I have is the shortage of neurologists that we are seeing, especially pediatric neurologists so working together with the Alliance in NC, we  are working on a program to mentor young people who may want to go to medical school and to encourage their interest in epilepsy. This involves high school and college students. Sparking that interest early is important. 

What are your hopes for the future for persons with epilepsy?  

I am truly excited to see all the new treatments that have emerged in the past few years. Coming from a time in which we had few tests and only 1 or 2 medicines to treat epilepsy, it is exciting to see all the new options. I fully believe that we are on the cusp of major leaps in our understanding of the brain and the neural networks that are going to make a tremendous difference for people with epilepsy.  My hope is that epilepsy will one day be something that we can totally change and take it away forever for all people with that diagnosis and hopefully even keep it from happening in some cases.  My other hope is that we all become kinder people with more respect and understanding of differences. 

Thank you so much for sitting with us to talk about your amazing work and for this reason, you are the Epilepsy Star for our March 2019 issue. Well deserved!!

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