By Amber Kaiser
I was so grateful for the opportunity to sit down with Donna Stahlhut recently, the Founder and Director of Epilepsy Foundation of Texas (EFTX). She was open with sharing some of her personal struggles with seizures and epilepsy in her family which many people in the epilepsy community can understand and relate to. With her love for her son, her frustration in the slow progress in the treatment of epilepsy, her tenacity for change and her passion for helping make a difference in the epilepsy community, Donna started EFTX in 1983 and has grown and evolved with it over time, reaching thousands of people with epilepsy and helping make their lives better through education, support and understanding.
Donna and I first connected a few years ago when I heard about the amazing work she has been doing through one of my neurologists after I had asked him lots of questions about the epilepsy community and wanted to help. He said Donna is a leader in the epilepsy community and that is very clear! I’m so grateful we could connect again here.
Thank you so much for your time and being here today. I would love to hear again about your family and why you started the Epilepsy Foundation of Texas. Could you share with us your story and how you started?
Certainly. Epilepsy first came into my life when my little boy, Derek, was nine months old. We were living in Fort Worth at the time. My family had a history of febrile convulsions and we knew this was a possibility. I'd had them as a baby, my father and my aunts had them, but none of them were spectacular. Derek’s lasted nearly an hour and I was on the phone with his pediatrician at the time (this was 1973) and he said to go to the emergency room. So we went to the emergency room at Cook Children's in Fort Worth and it took them forever to get the seizure to stop. Following that, we were hospitalized and they ran some tests and pretty much said, “Just go on with your life. Everything's going to be okay.” And it pretty much was for the next five years. They actually gave us some phenobarbital to take in case he had another seizure. I tried that one time and he just went berserk and I thought I'm never putting that in his mouth again.
Five years forward we had moved to Houston at that time and he started exhibiting some very unusual behavior that I couldn't figure out exactly what was happening. I would see him sitting and then he’d be rubbing his fingers together and had a strange look on his face and it would come and go. I thought that was really odd. At one point, I saw one of these episodes start and stop and I realized this was really unusual so I made an appointment to see his pediatrician who then referred us to a pediatric neurologist. And before we could even get in to see the pediatric neurologist, he had been playing outside, came in from the backyard and his legs went out from under him and he crashed on the floor. So I called the pediatrician and she said to go to the emergency room and we went to the emergency room in Houston and from there he was admitted to the hospital and they were running tests. We had an appointment with a pediatric neurologist right then and he was diagnosed with temporal lobe epilepsy that was coming from the left side.
We went on with all kinds of different medications and he was constantly drugged up. He was seizing and his seizures were out of control. He was sick from the medications. We went through pretty much four years of trial and error and all kinds of awful things. We switched pediatric neurologists and saw another one who looked in his eyes and said, “This kid is over medicated. You know, we need to come down off of all of this.” So it was a real trial and error kind of thing. And we went through four years of that and then the doctor put him on a new medicine called Tranxene. Shortly after that medicine change, he began having countless seizures and they went on and on and on and we ended up in the emergency room at Texas Children’s and he was hooked up to an EEG. And, for the first time ever, he had a seizure on an EEG.
At that point, four doctors came running in while this was going on, and we're looking at it and they started talking to us about the possibility that he might be a surgical candidate. After another year of more trial and error and testing things, he ended up having epilepsy surgery at Methodist Hospital which is the place where they were doing surgery at that time. There were no pediatric neurosurgeon surgeons around and his surgeon was Dr. Bob Grossman, who was the Chief of Neurosurgery at Methodist who actually passed away last October. Because of the surgery, Derek had his very last seizure on the way to the operating room when he had just turned nine years old.
At that point, some of the doctors I knew talked to me about the need to have epilepsy support for families in Houston. How can we be living here in the 4th largest city of the United States with nothing? And there was no help for people with epilepsy anywhere. So, following Derek's surgery and recovery, I put a phone in my kitchen and formed a Board of Directors of 12 people and I was the President of the Board and we started the Epilepsy Foundation. And, I remember wondering if that phone was ever going to ring, if there were really people out there who needed help and, of course, there were and the need kept growing.
We started out with 31 counties in Southeast Texas and that was really a media market that was determined and we became an affiliate of the national organization. Epilepsy Foundation of America that was located in Landover, Maryland, started providing services to people with epilepsy, and over the years and at the time, Dr. Grossman, my son's neurosurgeon said to me, “There's somebody up in Dallas, you need to meet.”
So I flew to Dallas and met Carmen Michael. She had founded the Dallas Epilepsy Association because she had a daughter with really bad seizures. Dr. Tom Zion, who was the head of the Bluebird Clinic in Houston, a pediatric neurologist, recommended I meet someone else so I flew to Dallas again and met Betty Brown, who was the founder of the High Plains Epilepsy Association. She had started that organization in the Texas Panhandle because she had a son who had drowned from a seizure. All those organizations were operating independently and they weren’t affiliated with our national organization, which we immediately did. And then over the years as we were growing, they were declining and around 2006 the Dallas organization was ready to close their doors.
They came to us and asked for help so we formed a new organization with two affiliates, one in the Dallas/Fort Worth market and one in the Houston market. Dallas/Fort Worth had tons of counties that they were covering. We were covering 31 in Southeast Texas, but they were covering multitudes across the Northern part of Texas. Then in 2011, the same thing happened in West Texas. What had been the High Plains Epilepsy Association a few years earlier, had become the Epilepsy Foundation of West Texas and they served the panhandle all the way over to El Paso and they were encountering the same problem so they came in under our umbrella in 2011. We expanded without really intending to expand. We expanded because the need was there. People needed help.
Yes, you noticed that more people needed help and that's just amazing how you grew to fill the need. What resources do you all provide for people with epilepsy and their caregivers?
We have many things. Right now, we’re preparing for camp and we have, I always say the world's largest epilepsy camping program. We have three camps and we do those in conjunction with three medical centers. We work with Cook Children's to provide Camp Neuron, a camp that's for kids ages 8-14 and it’s taking place in San Antonio this year for the first time. Camp Spike ‘n Wave, our biggest camp, is just outside of Houston at Camp for All, which is a beautiful handicap accessible facility and we helped one of the organizations that built that camp. We work with a medical team from Texas Children’s for that camp which is also for 8-14 year olds. Kamp Kaleidoscope is in the Dallas/Fort Worth area for teens ages 15 - 19. Children’s Hospital Dallas provides the medical team for Kamp Kaleidoscope. Kids with epilepsy ages 8-19 go free for a week with a medical team that are top-notch people in the field of epilepsy as well as camp counselors and volunteers that we train.
We also have two family camps in the fall. We have a camp for brothers and sisters and kids with epilepsy that takes place over a couple of weekends.
And the whole family can go?
Yes, the whole family can go to the family camp and there are two of those going on. One in West Texas and one in the Houston area. All those kids go to camp for free and it costs at least $1,200 to send a child to camp. The last couple of years the camping programs have been virtual (due to COVID) and we are requiring everyone to be vaccinated this year.
In addition to that, we have a lot of awareness and advocacy issues. We advocated to make school training mandatory for all school personnel, school training about seizure recognition and first aid. That was passed in the state of Texas under a law called “Sam's Law” and now all school personnel are required each year to take training. It’s an online training that they can do and that is making our schools much more seizure safe.
We've also worked through the Texas Education Agency to have school training available through the public school curriculum. And that starts in another year. That will start in second grade and go through high school and kids will have that training each year. We really are trying to make Texas the safest place there is for kids with epilepsy. We have support groups for families, adults, or anyone who wants a support group. Some are in person, or getting back to being in person again. Some of them are virtual and we have an education series that goes on periodically throughout the year. Those are done virtually and we get a lot more attendance when they are virtual. We do a lot of those especially in the summer.
And we’ve also launched some new programs that provide training for people with epilepsy through a series of epilepsy self-management programs. We have a number of people signing up for these programs. They are going online and that just started in the last couple months.
Oh, wow. That's awesome.
And then we have our medical clinics. We have clinics in seven different locations and people with epilepsy who are qualified under the “200% below the poverty line” can be seen in our clinics at no cost. They can get their medications at no cost because we worked through the patient assistance programs with the pharmaceutical companies. They can get MRIs, EEGs, whatever testing, whatever labs they need. We have about 1,000 patients in our clinics right now.
Wow, I know I keep saying it, but that’s amazing work that you do. How do people find out about you? Especially the people that are new to epilepsy and speaking from my personal experience, too, you just, you don't know where to start or where to look. I think there are more epilepsy resources now that people just don’t find.
Or because you don’t know you have epilepsy because that’s not the diagnosis that anyone gives you which has always been a problem. It takes some people a long time to get there, to figure out this is actually what epilepsy is. And even for people to equate the two (seizures and epilepsy) and this is how bad it used to be. I think with all of our training, some of this has gone away, but I remember once talking to a school nurse who had called us and she was wanting some information about seizures and I said, “You know, I’ll send you that.” And I happened to mention the word epilepsy and she said, “No, I don’t need any information about epilepsy. I need information about seizures.” This was a school nurse, so this tells you the real lack of information that has been out there for many, many years.
I completely agree with you on that.
We used to have a program called “Winning Kids” and this was supposed to be some child who would be recognized and be a “poster kid” for all the kids with epilepsy. One of our pediatric neurologists referred this family to us to be part of it. I'm talking to the mother and the mother hadn't realized the child had epilepsy. She said, “You know, I finally figured it out when he talked to me about the Epilepsy Foundation.” It has always been an issue and I think it is starting to subside a little bit, but it is still there.
This is the end of Part I in our interview with Donna. Join us in our interview conclusion in Part 2, to hear Donna's thoughts about the stigma with epilepsy, the biggest gap in the epilepsy community and the concept of continuous care.
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