Understanding Epilepsy, with Anna Diaz & Luis Martinez of Epilepsy Alliance Florida | EDB 324
Epilepsy Alliance Florida’s Anna Diaz & Luis Martinez share facts about seizure disorders, and how the Alliance is working to increase awareness and support.
Anna Diaz is a Social Service Aide for the Epilepsy Alliance Florida (EAF), and is herself an epilepsy self-advocate. Luis Martinez is a Community Resource Specialist for EAF.
Established in 1971 as a not-for-profit 501(c)(3), EAF is the principal agency for epilepsy programs and services sponsored by the State of Florida, servicing over half a million Floridians who live with the condition. For most of our history we were known as Epilepsy Foundation of Florida but in July 2018 we formally changed our name as we co –founded Epilepsy Alliance America, a nation-wide network of community-based epilepsy organizations. EAF also serves as the lead advocate for the rights and needs of people with epilepsy and seizures at the local, county, state and national level.
For more about EAF: https://epilepsyalliancefl.org/
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Note: the following transcription was automatically generated. Some imperfections may exist.
DR HACKIE REITMAN (HR):
Hi, everybody, welcome to another episode of Exploring Different Brains. I’m Dr. Hackie Reitman and today we’ll welcoming the team members from Epilepsy Alliance Florida: Anna Diaz and Luis Martinez, welcome.
LUIS MARTINEZ (LM):
Thank you.
ANNA DIAZ (AD):
Thank you so much for having us.
HR:
Let’s introduce yourself, and we’re gonna go ladies first, Anna?
AD:
Jeeze, pressure. My name is Anna Diaz, I for epilepsy Alliance, I work in the social services department as their aide slash assistant. And I’ve had epilepsy since I was six. My seizures aren’t controlled. So I absolutely love doing this work and meeting other people with epilepsy.
LM:
Well, I’m Luis Martinez, I’m a part of the Prevention and Education Department. My job consists on educating the community trading the community all the way from like school personnels, and different people, you know, from police department, and anyone who wants to learn on what to do. If a seizure happens at their workplace or their house or you know, any place that I do those free trainings, I also go ahead and do a lot of health very events, and will you call it community resource specialists, specifically here in Broward County. But we do have a whole entire group of Miami Dade County and different counties here South Florida, and Central Florida and northern Florida. So it’s just an amazing opportunity I love what I do is the passion. And if you get to meet a lot of great people, people like Adam, you know that that are have gone through, you know, all these things because of epilepsy and seizures. And it just is an amazing touching, you know, jobs. It’s like a dream job in a way so very grateful for it.
HR:
Well, let’s talk about the prevalence of epilepsy here in Florida.
LM:
Well, you know, a lot of people don’t know that it’s something that is becoming more and more known. A lot of people are getting educated or what seizures are, or what epilepsy is. There’s always been a stigma. You know, for example, a lot of people think that that has to do with just a mental issue, or your mental health. Well, it does affect your mental health, but it’s neurological is it has to do with the brain, it has to do with something going on in your brain that needs our help, right that needs correction. So we try to educate especially here, Floridians, we all know that we’re a little stubborn, right? What it is, you know, to deal with someone with epilepsy because as we know, it’s just not the person that has epilepsy because also their family members is their friends, their workplace, it affects everyone around. So one thing that we tell people is that it affects again, not just the person that has epileptic, but is everyone so we want to go ahead and educate, help them know where to get help, you know, help them have, well, you know, more or less a normal life. And you know, if you want to go ahead and jump in a little bit of some of your experiences.
AD:
Yeah, I mean, another another thing to add on is that people I feel people don’t really realize how common seizures can be in an amine epilepsy is is very common as well, one in 26 people are going to develop epilepsy at some time in their life. And I don’t sometimes like if you put that into perspective, it’s it’s crazy, like how many people that actually is, and one in 10, only 10 People one and 10 are going to have a seizure sometime in their life and may not be epilepsy, but they’re going to have a seizure. And like Lewis said, it’s really it’s really important to know what to do and what not to do, because their seizure first aid is a lot more of what not to do, because of myths that go back. before either of us were even a thought.
LM:
I want to point out that just in Flroida, not nationwide, just in Florida over half a million of people are impacted by epilepsy.
HR:
Half a million in Florida alone.
LM:
Only in Florida. Yes. And and that’s just a record number that, you know, a lot of times keeps drawing throughout you know, every every six months there’s more and more people because that’s another situation we wanted to point out is that some people that are epileptic are a little embarrassed or shy right to to say that they have it and they they feel they’re gonna get judged. They might not get the job that they want. Just many different reasons. We just want to tell them look, it’s okay. To not be okay. It’s okay to ask for help what we’re here for you. It’s, it’s okay. So that’s just people that we know of that have come up to us that that you know, they have gone through a medical procedures, but I’m pretty sure there has to be way more than that.
AD:
Absolutely.
HR:
What are the main triggers and challenges when it comes to epilepsy?
LM:
Anna you’re the MVP when it comes to this.
AD:
Triggers and challenges. Wow. So I would say I’ll start with triggers triggers for for individuals with epilepsy, it’s, it’s everybody with epilepsy, it’s so individualized. So like, my biggest trigger is heat. And I live in South Florida for some reason. But it’s heat. So if I’m outside and heat for a long time, I’m more prone to have a seizure. So I know that’s something to stay away from. But somebody somebody else it could be stress, that’s a huge one as well. Emotional stress, getting getting sick women’s time, time of the month, their prompt and having more seizures. So for everybody, it’s it’s very different. And challenges I there’s there’s a lot of them. And it also, it depends on how severe the person’s condition is whether they can attend, you know, a quote, unquote, normal school without having seizures. Like I had to be put out of school and switch to homeschool, because I was just having too many seizures during the day. So but that’s that’s just me, you know. So that’s one challenge I went through a bit. Another big challenge, I would say is everybody I come across that has epilepsy deals with a lot of memory struggles. Whether it’s short term memory, or not remembering what what time it is, or whatever you it’s usually short term memory, it could be long term as well, or just little blank spots that you can’t really fill in portions of your life. So that’s a big one as well.
HR:
Can you talk about the overlap between epilepsy and other neurodiversity issues such as autism, ADHD, others?
LM:
Well, you know, one of the things we want to point out is that there’s different types of seizures. So a lot of people when they think about a seizure, you know, they just think about someone collapsing sort of floor and convulsing. But that’s just something that, you know, TV has always taught us, right, but there’s actually different types of seizures. And I’m so happy you mentioned ADHD, because some of the seizures that we’ve seen could be very relatable to that, right, where someone just blanks out the space out for just a few minutes. And then they come back. And that could happen more than once throughout the day, especially among kids, but it could happen to anyone. So another situation is that we don’t have a cure yet for for epilepsy, we do have different resources and medications, surgeries, even some type of diets that could help prevent the seizures. But it’s just one of those that we still don’t have a cure. I know a client of ours, for example, that, you know, he was a seizure free for 15 years, right. And, again, that this year started happening again this year. So after 15 years, you know, he was okay, it seemed like he was secure. But at the end of the day came back, you know, and for no reason no one knows. But now he’s getting the treatment medications have changed. So it’s one of the things we want to point out so people that epilepsy is something that, you know, it targets anyone it could happen to you, me, and the reason being because of brain injuries. One of the things that we are navigating with this helmet fitting with a lot of the bike helmet fitting and we all know, especially children, they don’t like wearing helmets, we see it all the time, even when motorcyclists that they don’t like wearing helmets, but we’re a huge advocate on that because it could just happened to anyone just because of a brain injury. You can start having seizures and become epileptic. So it’s just all like different situations with different neurological disorders. This one could target you at any time. It’s something that there’s no cuteness. It’s something that could be a challenge again, for that same for the person that that is going through it and everyone around.
HR:
Speaking of interesting overlaps, Anna tell us about your pro wrestling career and how Oh, you’ve used that to help the community.
AD:
Um, oof, that’s a couple of years ago. So…
HR:
I didn’t want you to get too comfortable.
AD:
So a couple years ago, I did I did actually wrestle professionally for an extended amount of time doing sports entertainment. And one of the ways that I brought kind of my condition and epilepsy and Epilepsy Alliance Florida into that kind of world is that I would put on Wrestling shows that people would attend. And Epilepsy Alliance Florida actually had a table there with information. And we raised a lot of a lot of funds and all the funds went to Epilepsy Alliance Florida. I mean, that’s, for me, that’s the number one cause.
HR:
That’s wonderful. Were you a good guy or a bad guy?
AD:
Depended on the day, it depends on the day.
HR:
How could South Florida better support people with seizure disorders and epilepsy.
LM:
we want one of the things we recommend, as is, you know, asking for trainings, they’re free, easy to do, they could do them online, they could do it through teams resumes, or I personally or one of our community resource specialists, we will go to your work facility, whether it’s a school or department, wherever it is, and we’ll do those free trainings. So getting to know the basics on these I can see on what to do. If a seizure happens, you know, anything helps donating Of course, volunteering for events, we just had our about three, three of our walks, right? Yeah, Miami, Broward, and West Palm, and they were amazing. And our walkie talkie events were just, you know, super, super awesome. I was there DJ. And it was just a great experience. So supporting our events or walks. You know, we have another one coming this weekend, I believe in Jacksonville. You know, we’re spread out throughout Florida. So if they could volunteer, donate, sponsors, connections, and more importantly, like, like, letting the community know about us, we want to help out and once again, it’s like it’s nothing to be alone for you know, you don’t have to be alone to do this, you know, be we want to be there for you, being part of our community supporting us spreading just the awareness.
HR:
So Anna, how did you first receive your diagnosis of epilepsy?
AD:
So I was in, I want to say kindergarten or first grade, some one of one of the two. We went on a field trip and I just collapsed. The school called my mom, I was like, Hi, we’re calling because your daughter had a seizure? And she’s like, No, she didn’t. Because from the aid from all that time, she thinks I’m like completely normal, you know, so she doesn’t expect something like that. How I was fine. And then we went to the doctor. And really the best test to take to know if you have epilepsy or if it was just like a one time seizure is an EEG, which is basically they put leads on all around your head. And they look at the electrical activity in your brain. And if it’s if you have abnormal electrical activity, that’s when you know that you’re having seizures. And if it’s multiple, you have epilepsy. So I think it just changed everything. Like I give super kudos to teenagers or young adults that get a diagnosis of epilepsy because they hypothetically they live their life from from one to 19 one way, and then you immediately have to change everything. Because you can drive now. When you go swimming or to the beach or something, you might want to have somebody with you. So it’s just, it just changes everything. And I know for sure that my mom knows way more about epilepsy than she ever wanted to know, because of the situation but she she advocates and my my family advocates for it Sue now, and we just hope for it to be more. We hope to hear more about epilepsy in the future for sure.
HR:
When the child first has epilepsy, and I know you’re not medical doctors or neurologists, with seizure disorder specialists, but what might the standard workup include or not include? Is it first seizure they don’t check out very much, and then if there’s subsequent ones? Are there any general rules of thumb?
AD:
I would think that first you basically get every scan, but I would think the firt first seizure, they would do a CAT scan, they would do if it was multiple seizures, I believe they would do an MRI and probably diagnose you with epilepsy, because like we said earlier, like some people can have a seizure, but not have epilepsy. And so if it’s multiple seizures, with no like nothing provoking it, you have epilepsy. So I would think that it would be a CAT scan and MRI, and then the EEG to confirm it.
LM:
And they will be on seizure, watch, you know, after their first seizures, it’s not always going to be a seizure watch, I myself, I remember when I got into a car accident, and a car flipped over, I didn’t have a seizure, but I was on seizure watch for almost like two or three months, you know, the doctor was just very concerned, because, again, you know, seizures are more automatically, they’ll consider your epileptic and, and then there, they got to do a different type of testings on what will work for you to control or try right to, to control those seizures. So it is a lot of back and forth. Again, one of the things we want to bring awareness is protecting this, you know, right here, you know, your head is just very important, especially for first children, I mean, for anyone, because it could happen to us to anyone, but with children, please help me it’s, you know, keep that head say, I remember there was a situation from a family member of mine, that they had hit their head, that it was normal. And they started, you know, having a seizure like two, three hours later, you know, and this, again, they had to have gone on their day, and they started having a seizure, you know, they started having a seizure after and eventually, throughout the weeks, they noticed that, you know, they became epileptic, something that they you will not think.
AD:
And some of the time, well, most of the time, 70% of the time, you’re not going to know why that’s the diagnosis. Why you ended up with epilepsy, because sometimes it can be a genetic change, or it could be hereditary, but most of the time, you’re not going to know.
LM:
We do want to say it’s not contagious.
AD:
It’s not contagious.
LM:
It’s not contagious. That’s what have you up without or you can it’s not like, you know, it’s not contagious. It could happen to any of us, right. But it is not contagious. So she can give it to me, you know, I can give isn’t the best, not how it works. We just for some reason, there’s a group of whether there really is a thing that is not contagious. And like she mentioned before, it’s not, you know, not that I’m saying that it’s not spiritual, but it’s something that, again, has to do with neurology, you know, it has to do with the brain and in our health.
HR:
How can people learn more about the Epilepsy Alliance Florida?
LM:
By visiting our website, epilepsyalliancefl.org. There we have everything from all our classes, trainings to our future events out of volunteers, and just updates, you know, getting to know our newsletters and and receiving those newsletters will be such a great help. So please visit our website, and you can email us through there and get in contact with us.
HR:
Tell us about the biggest misconceptions.
AD:
Yeah. I love talking about it. Because it’s there are so many. But the biggest one in my eyes is that when somebody is having a seizure, that you’re supposed to put something in their mouth, Oh, no. So you’re not your tongue, your tongue is a muscle. And if you were wanting to do the seizure, first aid, that’s something we cover all the time in that. I’ve heard horror stories of people putting credit cards, spoons, wallets, shoes, and people’s mouths while while they’re having a seizure. And again, your tongue is a muscle, you’re not going to swallow it, people think that you’re going to swallow your tongue. It’s very strong. And then another thing that I’ve heard from other people is oh, they can bite their tongue. But how many people here in this room have been in their tongue without having a seizure? You know, all of us, I’m sure at one point. That’s the biggest myth about I would I would say is the biggest myth and another one is a little older is people still feel that when when individuals are having seizures, that there’s a demon possessing their body. So they don’t want to do anything or help the individual because it’s a demon, supposedly, but it’s they just they’re not informed that it is a seizure. And that It’s a neurological condition.
HR:
Now recognizing there’s a wide variety of types of seizures you can have, can you give us a quick cookbook for our audience of what one should do if someone there with is having a seizure, and I’m, you might explore the different types of seizures briefly. But I would like our audience to leave you a feeling that they’re going to go to your website and learn more. And you’re going to give them some resources, but you’re going to give them some easy cookbook things to remember.
LM:
Part of my job, right? First thing, believe it or not, is staying calm, is staying calm, you know, just breathe in, breathe out, and then helping the person, one of the things we always recommend is putting the person to the side, cushion their head, because like we’ve mentioned before, it has to do with a neurological disorder. So we don’t want that person to continue hitting their head, especially if the convulsing, you know, so putting something kind of like a pillow or a jacket, something soft on their head will help out. Like she mentioned before not putting anything on their mouth, they might get their tongue cut, or they might start bleeding, right. But that’s the reason why we’re putting them on the site. So their saliva and blood, anything that’s liquid just goes through the site, and then we’ll choke on that, making sure there’s no sharp objects, like tables, chairs, anything that could cut out, continue hurting the person away from that, okay, so we keep the person away from those things, we try to move things that my heard them. And one important detail is also knowing the time, so try to like document as much as you can of what time it started, how long that it took that for that seizure to end, if you see it past longer than five minutes, please call our a 911. But we want to let people note that sometimes this is normal for that person. And not all the times do we have to call 911 We, you know, we want to influence that. But at the end of the day, we just want that person to be safe. So whatever you feel in your heart to do it, please do. But it’s that simple. Because, you know, we want to make sure that everyone understand that that person goes through this probably every day is normal for them may not be normal for you, but it’s normal for them. So we want to be there after the seizure happens want to make sure that they Okay, they’re kind of back to Earth. I don’t know if you’d like to add anything else?
AD:
No, that’s just that they’re responsive. And one thing I would add is to check if they have any medical ID, just because you can see what if they’re diabetic that goes into some other like immediate 911 situations. And if it says they have epilepsy or they have a seizure disorder, then you know not to call 911 immediately, because they’ve experienced this before.
LM:
And just being there for the person is very important, because we don’t want them to feel like they’re a burden or bother because they’re not this is something we have to live with. And this is one of the reasons why we’re bringing this awareness, this free trainings, this free information. So again, it could happen to anyone at any given time.
HR:
And they should get in touch with Epilepsy Alliance Florida. And get as much education as possible, all for free.
LM:
Free. It’s free, fun. We bring goodies, you know, we make asphalt and there’s different types of trainings. We cater to the audience. So if it’s for our school personnel, we have a special training for that is for police officers, we have a special events for kids. I come all like colorful, and I kind of evolved the DJing and the music. So I make it fun for the kids and the students. So we cater to our audience. So it’s not going to be a boring presentation. People love it and you get certified by the way, at the end of the day, you get a legit certification saying that you are certified to help out and response to any seizures. Yes, it’s free. You know so…
AD:
You can add it to your resume.
LM:
I did.
HR:
That’s good. I’ll tell our interns. Yeah. Is there anything you’d like to cover that we have uncovered?
AD:
I would say I would just want to go into the 911 thing a little bit. Another because that’s kind of another misconception about epilepsy and just seizures in general. If it’s a first time seizure for the for the person, then you absolutely call 911 immediately. If it’s clusters, which basically is a seizure after another seizure after another seizure, and they’re not stopping, then that’s a nine on one’s chip situation. And if it’s in water, it’s always a an emergency. If the person is diabetic or pregnant, it’s always an emergency. Um, and I believe if the seizure lasts longer than five minutes, an emergency button most of the most of the time a seizure is is really not an emergency. Only in those scenarios.
LM:
Which it is very interesting you do because, again, everyone, right will say, “Oh snap, let’s just call 911.” Right. But again, part of part of that is the education we get to the presentation that we give to the community for them to know when to do it. And it just is an amazing thing to learn this, it’s like you said, it’s something you can add to your resume, you know, both emotionally, you know, mentally eat. I know, in education really, right. There’s something that it’s kind of like a good backup to having also kind of like a hero, you know, you know what to do. So yeah.
AD:
And just like people do have to do CPR trainings for a job or for, for personal reasons, maybe we can add a seizure first aid training too.
HR:
So it’s a lot more common than we think. And everybody should be educated in what to do, and what more importantly, what not to do. I’m going to ask one final question. Ladies first. What do you wish society understood about epilepsy?
AD:
If that question was directed to individuals, specifically with epilepsy, I would, I would tell them that they are not alone, no matter how alone you feel. Because like we said earlier, the stigma that nobody talks about it. If nobody talks about it, nobody can connect with somebody that actually has it. What what I wish society in general knew about epilepsy. I would say that there, there’s more, there’s more to epilepsy than just seizures.
HR:
Luis?
LM:
My message is that we’re better together, and knowing more and us coming together and learning the education and every parts and hearing testimonies, because there could be knowledge that we learned, but when you hear from someone like like Ghana, that knows what it is that is living with it, it kind of opens your eyes, you know what, I gotta do my part. So I will tell society, let’s do our part, though. It is a problem, but you could become the solution. And you could become that answer, you could become the light, you know, and put a light on epilepsy and bring awareness and, and this lets, you know, it’s something that is just available to you. So come and get common learn. We need you, we need you. We need to we need to do this together and not to ignore it. That’s just one of the things that I just feel that our society has kind of been like, Okay, well, this is just a little group does it. It’s not just a little group, like I mentioned before, it affects everyone around that person that has epilepsy. So it affects the family. It affects a well being their finances, their mental health, it affects every area of their life. So we want you to go ahead and get educated, be part of our team and get to know us.
HR:
Well said. Luis Martinez, Anna Diaz, the Epilepsy Alliance Florida. Thank you both so much, and we hope you won’t be a stranger to all of us have different brains. Thank you for all the good work you’re doing.
AD:
Thank you so much for having us.
LM:
Thank you so much for having us. Jinx.
