Interview Chat Continued with Donna Stahlhut, Founder of Epilepsy Foundation of Texas: Part 2

June 22, 2022

By Amber Kaiser  

Welcome to Part 2 of our interview with Donna Stahlhut, CEO and Founder of the Epilepsy Foundation of Texas (EFTX). If you missed Part 1, check it out here! If you are back for Part 2, let us dive in! At the end of Part 1, Donna had been discussing the concept of how people still get confused about seizures vs. epilepsy and equating the two.

Amber

You’re right about that. And that brings me to another question–what, in your opinion, is the biggest gap in the epilepsy community? How do we need more help?

Donna

The one thing that I always hear from people with epilepsy and there was just a big conference in Nashville called Epicon. There were about 450 people with epilepsy who came together for that conference. It was put on by our national organization. And one of the messages that I took away from that meeting was that so many people with epilepsy feel that they have been stigmatized, that they didn't know anyone else. I mean that they just felt so alone at one of the first education programs at the Epilepsy Foundation here ever did was called “You Are Not Alone.” And it was trying to make people aware that there are thousands of people like you out there. 

I think with social media, some of that has certainly improved, but it is still there that people have always felt marginalized. They felt that they weren't as good as everybody else somehow and that this condition sets them apart. I once spoke to a man who had been the head of a large Houston business. He had had a heart attack at some point in his forties or fifties and then he developed epilepsy in his sixties, and he said it was the most traumatizing thing. He didn't know how to explain it, but he felt that this was much more significant than his heart issues and anything else. He’d never encountered this where he felt less than everyone else. 

I've always felt if we could get people with epilepsy to rally behind you, you have certain rights, you have certain things that we all owe to you as being part of this community and that we all need to sit together on this. I’ve always just felt that if the people with epilepsy were more demanding, more fervid, they would have more. I mean, I look at what the LGBTQ community has accomplished by rallying together. I've always felt if we could get people with epilepsy to do that same thing and have that same passion that “I am as good as anybody else and I deserve to be treated this way” and not to feel marginalized. 

Amber

 

Yes, I completely agree with you on everything you just said. I think a lot of people feel even now, even with the resources we have available now because of people like you and all your hard work, you often still feel alone and like you don't know anyone else who has it. And you know what, when you go to the doctor, they don't give you all these resources. You don't know what to look for. Unless you happen to have a family member that wants to help out or is supportive, you're just going to have to go figure these things out. Like you said, you make a really great point with the lack of support. And that reminds me of another question I had. Do you think the stigma of people with epilepsy has gotten any better? Do we still have to be careful about who we share it with, especially in the workplace? What are your thoughts on that?

Donna

I would hope not, but I'm a realist, too. Probably 15 years ago or so, there was an American Epilepsy Society conference and someone had a seizure there and the place is full of people who know about epilepsy. One of my colleagues here in Houston reported to me that they were horrified because this place where this individual worked said something to him about not knowing if they were a person that could do the job that they hired them for because they have epilepsy, and it was like of all things, to have that going on there. I do think it has gotten better, but there is still a lot that needs to be done.

Amber

Yes, I understand what you mean. How do you see epilepsy services? How do you see they've evolved over the years? Do you feel like we've made progress in that?

Donna

Well, if you have epilepsy the biggest thing you have in your life is trying to get your seizures under control. So that's what you want. You don't want to have any more seizures. We still have 30 % to 40% of the population that no matter what we do, they're still having seizures. You would think that we would be further along than that and the amount of time that it takes for someone to go from having seizures to surgery, if they qualify, it's still a turpitude. 

It took my son 4 years, but that was highly unusual at that time. It was supposed to take 20 years until you get to it and that hasn't dropped that significantly yet. There are still massive areas of this country that are medically underserved and how long it takes someone to get to that point. You're fortunate if you're close to a major center where this kind of thing happens, but there are plenty of places even in Texas that are totally uncovered where people just go on accepting having a couple seizures a year and that's okay. Well, I realize that if I had a couple seizures a year, it would totally impact my life and how I'd be able to live and what job I'd be able to have. One or two seizures isn't good enough. I mean, it just isn't. You can't drive. What are you going to do if you live in Houston and you can't drive?

 

Amber

That is so true. I guess the good thing nowadays is that Lyft or Uber are available for people if they can do that and the service is in the area where they live. Although, I do understand, too, that can add up. I think that's helped change some things in that perspective. What are your thoughts about continuous versus discontinuous care in epilepsy? Most people with epilepsy, as I'm sure you're well aware of, have to wait 3 to 4 months, or even longer to see their doctors and have to completely disconnect from their doctor and care team between visits. As a caregiver and as a social worker in the epilepsy community, what do you think will be the importance and impact of more of a continuous care concept for epilepsy?

Donna

I think that's marvelous. I don't know how we get to that point. It is problematic and if you start having seizures and you're supposed to go in and see somebody who knows something, the waiting list to get in there is huge. My son was having countless seizures and was hospitalized a number of times because he was intoxicated (over medicated). I would call and maybe I'd get a call back at some point. 

Then we finally had a really kind pediatric neurologist who said, “Call me if he has a seizure.” I asked, “Every time?” He said, “Yes, I want to know. Call me and let me know that he's having seizures.” And that is so unusual. And we would get a call back every night from this doctor checking on us. We were not hospitalized until the end when he was having all these many, many seizures, which turned out to be a real blessing. Families struggle with that. Their loved one is having seizures all the time and the doctors don’t call back, don’t communicate in any way. I feel for those families who are caught in that position because it's not easy.

Amber

Yes, I understand. That’s very common.

Donna

It really is so important to keep advocating for your child and not to give up and to say, “You know, maybe this is the best it can be.”

Amber

They just kind of settle with where things are at.

Donna

I don't know how you reconcile with that. There are more things coming out so there is much more optimism and much more hope now that there is something that's going to be available, that there is new technology, that maybe something will come and help, whereas a number of years ago that just wasn't the case. Things hadn't changed that much.

Amber

That's so true. I completely agree with you.

Donna

And then you have when you're hospitalized there are families who have to travel. I felt so fortunate that we were living in Houston and this work was being done in Houston. I kept thinking because earlier on, this pediatric neurologist told me if it turns out that he is a candidate for surgery you need to go to Montreal. And I'm thinking that if we had to go to Montreal, it would be hard enough in Houston. We had no support system and that's what many families are faced with. They have no support system where they're going for this particular care.

 

Amber       

I understand and completely agree with you on that. Thank you so much again, Donna, for sharing your time today and your story. I have one more question to ask. What are some of the biggest things you have learned in the epilepsy community, and of course, with all of your personal experience that you want the general public to know and understand? You described a little bit earlier about stigma and that we continue to try to work around. Is there anything you would want the general public to know and understand about people with epilepsy, or anything else that you would like to share?

Donna

One thing that comes to my mind is that once epilepsy comes into your life it just doesn’t go away. Even if you’ve been seizure free for a while, it’s always there. I have this saying that once epilepsy comes into your life, it just doesn't go away. It's always there. And even though it went away for my son, there is no guarantee that it's not coming back at some point. I think there is that vulnerability that everyone with epilepsy must feel even when seizures stop for a year. It might not be forever. There are too many stories out there where people who had epilepsy went away and it came back at some point. I just think that people with epilepsy must feel very insecure, never knowing when another seizure might come. You go into a restaurant and think, I haven't had a seizure for three months now, I'm going to be okay here, and then you're not. I just think it has to have this big impact on how you feel about yourself, how you live your life when you feel safe, if you ever feel safe. And then once you know about SUDEP, always wondering am I safe, or am I not safe? I think it leaves people very vulnerable more than probably anything else out there because it's like you're walking around with an alarm clock in a bag and you don't know when it's going to go off.

Amber       

So true. You make really, really great points. (I have never heard anyone describe more accurately and with genuine empathy, of what it's like to have the experience of always having seizures in the back of your mind and how it affects your life Every Single Day.) I completely agree with you and with Neureka® we can help provide more of a 24/7 support system and perhaps we can help alleviate some of that safety feeling that we’ve never had, that you were describing. I think just having a support group as well, like the amazing work you have done, can help make a big difference in people’s lives like you already have and having a community and people you can talk to who understand.

Donna

Thank you very much for sharing your story with me today. I think it looks exciting and I'm anxious to hear more about it.

Amber

Yes, thank you so much, Donna. We’ll be in touch.

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