Purple Day Openness! - Cassidy Megan, Founder of Purple Day
Hear about the origins of Purple Day, its purpose, the positivity and how to make a difference, personally! Change the world (for those affected by the epilepsies) for the better! With founder Cassidy Megan!!
Reported by Torie Robinson | Edited and produced by Pete Allen
Podcast
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00:00 Cassidy Megan
”We talked about, like, the media showcasing seizures (earlier) and how often it's misportrayed, and it is! And it's also hard to portray the other kinds of seizures because they're not all visible!”00:12 Torie Robinson
Fellow homo sapiens! Welcome back to Epilepsy Sparks Insights. And, Happy Purple Day! For those who are unaware, Purple Day is an internationally recognised day for improving epilepsy awareness and understanding (amongst those affected as well as in the general population!), decreasing stigma, encouraging support for those affected, and, getting governments to increase investment into epilepsy research, preventative measures, support, and treatments!
But… what makes today, this episode, even more special, is that we are chatting to the Founder of Purple Day - Cassidy Megan! Do make sure that you like, comment and subscribe to the channel, and share this episode with everybody you know, so that together, we can help to improve the quality of life of the 75 million people (at least!) affected by the epilepsies!
So, now, onto our global star and founder of Purple Day, Cassidy Megan!!01:07 Cassidy Megan
So, I'm Cassidy Megan, I'm 25 years old. I have generalised epilepsy, myoclonic jerks, and photosensitivity. I was diagnosed originally when I was around 7 with complex partials [seizures] (which have changed over the years, so I got a new diagnosis). My relationship to Purple Day: I had started/founded it in 2008 when I was 8 or 9 years old. And yeah, just to create more awareness for epilepsy, let people know that it's okay to talk about, it's a health condition, like, you don't have to be afraid. You don't have to be… it doesn't have to be something that's hidden or be, like, ashamed of. And then, you know, I also want to educate the public that… the same things: it's not something to be afraid of, It's something to, like… it's a health condition! It's no different than someone has asthma and they take treatment for that or glasses or something else. So yeah, just really normalise it and yeah.02:01 Torie Robinson
How come when you were 8 you decided to do this? Like, that's a pretty big deal when you're 8 years old.02:08 Cassidy Megan
When I was diagnosed and I hid it for a year and a half because, I mean, I didn't want it and…02:13 Torie Robinson
Well, no…!02:14 Cassidy Megan
And I told my doctor, and he's like “So we think you have epilepsy. That's what the EEG is saying. I'm like… “No, no…02:23 Torie Robinson
That's not convenient, mate. You know?02:25 Cassidy Megan
…I don't, I don't want it. You can take it back!”.02:27 Torie Robinson
Mm-hmm, mm-hmm.02:28 Cassidy Megan
He's like “But you have it so we're gonna deal with it.”02:31 Torie Robinson
Mm-hmm.02:33 Cassidy Megan
I’m like “Rude, but ok!” I didn’t know anyone else that had it when I was diagnosed, so, I didn’t… I’d never seen a seizure, I’d never heard [of] epilepsy. My parents had seen incorrect portrayals of it on TV or in movies (which, unfortunately, happened, at the time).02:50 Torie Robinson
Still often happens!02:52 Cassidy Megan
It still does happen…it’s getting a little better!02:24 Torie Robinson
Yeah.02:56 Cassidy Megan
My aunt had something similar…02:58 Torie Robinson
Oh, ok!02:59 Cassidy Megan
…but not exactly the same. And… I wasn't sure exactly what that was, because she wasn't open about it. So, then after I started talking about it, like, the local [Epilepsy] Association Of The Maritimes came in and gave presentations to my class about epilepsy…03:16 Torie Robinson
Oh, cool!03:16 Cassidy Megan
…just to kind of like, indiscreetly educate them and the school, right? Just because why not?03:24 Torie Robinson
Yeah.03:25 Cassidy Megan
Also probably because I was in the class! But, as they were talking about it, I seen my friends were really interested, really wanting to learn more and really like “Wow, what is this thing? Can we ask questions?”. And they got to the question of like, “Do you know someone, do you know someone who has epilepsy?” and they were like “Yes, we do. We work with lots of people who have epilepsy.”. And it was somewhere along the lines of…whatever I said, I brought my mom and teacher aside and told them that we could tell them that I had it, and I did stop being very low for a little bit… like, to like overnight camps or trailer parks stuff like that I would get parents would have called to come pick me up early from birthday parties before photos and everything. And, like, I understand, you know; it is just the fear of the unknown. What comes with the unknown? So, you don't you don't know?04:20 Torie Robinson
And you don't know what you don't know! And the more you learn, the more you realise you don't know!04:25 Cassidy Megan
Hahahaha!04:25 Torie Robinson
And that can get even a bit more scary at that point, right?04:26 Cassidy Megan
It can be! And… it can be even a bit more scary, but also it can also be a bit more eye -opening?!04:32 Torie Robinson
Oh yeah, for sure!04:33 Cassidy Megan
Some [people] did come around after, you know, talking about it, learning more, getting that education. But even after I was open about it now, like, I still didn't know anyone who had it. I still felt very alone. And even though I didn't have to feel like I had to hide it, but I was also like how come I'm the only one with this? We started getting more involved with the agency and I started finding more people and like, a lot of us had the same initial reactions and the same fears! So, we were watching um, me and my mom would watch the TV show together and we were watching, a commercial came on (it was, like, a run for… probably cancer…um...I'm not really… I don't remember exactly) but I was like “Huh, how come [there isn’t] something like this for epilepsy?”. And mom's like “Well, the whole month of March in Canada is for epilepsy awareness!”. I'm like “Mmmmm, it seems long..!”. So, I was like, I was like “Okay, but like, what about 1 day?”. She's like “I guess there's not really 1 day...” so I was like “Well, that should change!”. And it was like “OK, so what are we going to do about it then? How are we changing it?” She's like “I don't know!” I'm like “Well, let's do a day where we just spread mass awareness and get everyone involved! She goes “We can do that!”. We contacted all of our parliament people, we called up the prime minister, we're like, “We're getting people wearing purple, I want this worldwide…”06:02 Torie Robinson
And why purple and not red and or blue or turquoise or orange?06:06 Cassidy Megan
In the talk, mom was like “Okay, okay, okay, okay, okay. Well, first, like, you want to start a day, okay, what do you want to call it?” - like, what is this? What is the… you got to figure some stuff out, figure some stuff out with it. I'm like “Well, things usually go through, associated with a colour. So, like orange day or blue day…”06:22 Torie Robinson
Hahaha.06:24 Cassidy Megan
… (I'm trying to find something that has a ring to it). And mom's like “Well…” (and she's looking up on her phone or the laptop computer) and she was like “Oh, the colour lavender is the official colour for epilepsy.”. I'm like “Lavender?”06:38 Torie Robinson
It doesn't have a ring to it does it? Lavender Day?!06:40 Cassidy Megan
Right! I probably said that, like “Lavender day? No…!”.06:44 Torie Robinson
Hehehe.06:46 Cassidy Megan
Well, so I said “What about purple day?!”06:48 Torie Robinson
Very interesting! So that's how it happened!06:49 Cassidy Megan
She was like “Purple day!” I'm like “Yeah, because then people can wear whatever shade they want and are not limited to one shade!” And my mom was like “Okay, yeah, that works!”.06:58 Torie Robinson
That's very thoughtful! Do you know what, I've totally… I really appreciate that because when I was setting up Epilepsy Sparks, right, I was like “I don't want to make it all like “pastelly” and “lavendery”... What's the darkest I can go?”! So, I really appreciate that… our thought behind it!07:16 Cassidy Megan
Yeah, and lavender is so hard to...like, through the years, lavender is a very hard colour to find. Like, purple can be, in general…. So I was like, I'm glad it's any kind of colour purple because… a beautiful colour lavender is, but yeah. And then even, it's hard to find stuff like that to wear. And then on top of that, epilepsy, epilepsy is so different - there are so many different kinds and all different shades of purple can kind of represent the different kinds of epilepsy in a way, like, you know, none of us are the same even though we have similarities.07:47 Torie Robinson
Exactly, exactly. And… I understand people make generalisations, right? We all do it as a species - with everything! We were talking about tribes before we started recording, weren't we! And the tribalism that still exists in our species. But, like, for instance, your epilepsy versus my epilepsy: we really empathise with each other and certain things that we go through - and we haven't even spoken about seizures much at all! Have we?! It was about side effects of drugs, it was about mental health, it was about all these different things but also we said “I don't get where you're coming from with that! What's that about?!” Right?! Because, nobody understands another person 100% and sometimes you'll meet somebody with an epilepsy and you're like “I’ve no idea what you're talking about!”! Which is like when, you know, you'll read a new research paper about something to do with epilepsy and it contradicts so much of what you thought was true (prior) and I know some people don't like that but I find it really exciting! What do you think about that?08:47 Cassidy Megan
I think it is exciting because the world, if you think about it, the world in itself, is ever changing and ever expanding, and ever growing!08:54 Torie Robinson
Right!08:54 Cassidy Megan
So, why would it not be the same with health conditions? Why would the new… the progression of new equipment, new research options, new variabilities with things… not then change? Because, now we have better access to information. Think of it like, the black hole images.09:12 Torie Robinson
And how hard they were to find!09:13 Cassidy Megan
Yeah, they're so hard to find and they finally found it! The first photo was like a really blurry orangey orb. And then a few years ago, they got like a really crisp picture where you can almost see, like, the exact actual ring and the illumination around it. If not for developments in technologies, and research, and all this stuff, that wouldn't have been able to happen. So why, why wouldn't it not fall to the same as health conditions and everything else with life.
So, I think the more research that is available, like those, the more options and opportunities we have for newer treatments, newer surgeries, newer medications, newer information to help better achieve - if not seizure freedom (because not all of us can have that, unfortunately) then at least seizure reduction.10:04 Torie Robinson
So far, we've spoken about epilepsy and seizures - which is the thing that, like, so many people think of when it comes to epilepsy - which I get, because traditionally, people thought epilepsy-seizures seizures-epilepsy, [and] that it's that simple, but, seizures is just one part of epilepsy, right, and sometimes - especially with things like mental health (in our experiences), it's, you know… something other than seizures can be one symptom of the epilepsy which is more impactful! What do you think about that?10:31 Cassidy Megan
I agree, there's so many different impactful aspects of life with epilepsy. It's the mental health, it's the stigma, it's the discrimination, it's the fears, it's the concerns. “Will I lose my job? Will I…10:45 Torie Robinson
Get a job!10:46 Cassidy Megan
…get a job?! Will I be kicked out of school? Will I be accepted into school? Will I be able to live on my own? Will I be able to… have any kind of independency? Will I be able to…do the stuff I see all my peers are doing?” It's well, it's the mental health, it's the seizures, the soreness after the seizures, the memory. Not remembering family members, not remembering coworkers, not remembering friends. It's not remembering day to day activities that you did 5 minutes ago or 5 years ago. It's not remembering a certain half of your childhood.11:25 Torie Robinson
Or adulthood, and when you become older, honestly, you don't even remember that either sometimes! Well, some of us! And that's another thing, isn't it?! Like, we were referring before to the diversity of epilepsy, but it's also the diversity of side effects of drugs, the impact on our cognitive function, how it affects us physically, short term, long term, when we're younger, when we're older, how seizures change over time is another thing that lots of people aren't aware of, but is a huge deal. Then, there's the impact for many people who want to have children: like, what's going to be the impact on that? That's something I think… to think about for Purple Day. Then there's the impact on, you know, sexual function for, for anybody! It can be very significant. There are so many aspects that aren't necessarily directly related to… what people first think of. They think “Just seizures”.12:14 Cassidy Megan
Yeah, it's not it's, it's not just the seizure, and you know, I know, I've…. it's not just us either like their family and friends all have the same/similar concerns to, like, “Will we be able to do any of this? How is it impacting us? How is our mental health dealing with/coping with it?”. And, you know, they had that worry and then, then they have the SUDEP [(Sudden Unexpected Death in Epilepsy)] aspect that we all worry about too, which…12:34 Torie Robinson
Sudden Unexpected Death in Epilepsy, yeah.12:37 Cassidy Megan
I always think of it like, if your brain was a stove, you know, you don't really use the backburners, but to warm things up. So, I think of it like a backburner thought, because like, I know it's there, I'll watch it, and I'm aware of it, but I can't focus on it because I can't control it. I can't stop it, actually stop it. And that's by doing what I actually wanna do, trying to avoid having seizures as best I can. That's the only thing I can do about it and I'm gonna do that anyways because I don't want to seize.13:08 Torie Robinson
And you don't want to experience the other things that can possibly happen as the result of your epilepsy as well.13:17 Torie Robinson
And a quick note: the epilepsies don’t solely affect people with the diagnosis. So, as part of Purple Day, let us remember and appreciate parents and families too. As well as providing care and support for many people with an epilepsy, they contribute significantly to raising public understanding of the epilepsies, and decreasing the stigma experienced by so many. The epilepsies affect mums, dads, children, siblings, even friends and colleagues! So let’s appreciate the support that they provide.13:47 Torie Robinson
Also, something that people often don't talk about, and I think, like, Purple Day is a really great opportunity for us here, is people think that commonly, if you have epilepsy, that's all you have, right? We've mentioned mental health, of course, that's a huge, huge aspect of the epilepsies in general, but also loads of people will develop epilepsy as a result of a brain tumour, as the result of a stroke, as a result of Traumatic Brain Injury! Sometimes, genetics, later in life can contribute to developing an epilepsy. There are so many ways… so many different things that can cause an epilepsy at different points in a person's life. Do you think that we need to talk about that more as well?14:28 Cassidy Megan
I think we do because if you look at all the stigma and discrimination that there is that comes with the diagnosis of epilepsy… It's just, kind of, like, anyone with a brain could have a seizure. And whether it's a seizure, whether that then turns into epilepsy or doesn't happen again, you still have those worries and concerns even with just one seizure. Anyone can develop it and it can develop it from a sickness, after effects, like you said, from the brain injuries…14:53 Torie Robinson
Meningitis or high fever…14:55 Cassidy Megan
You just… some people just develop it! Some people [are] just on a walk or on bike ride and just have a seizure. No prior existence of it in their lineage, in their heritage, and any of it, and they will just have a seizure, and they're the first ones in their family to - or they might not be but… - no prior/previous abnormal brain activity and then they have epilepsy.15:20 Torie Robinson
Do you know what was interesting (and this is personal): I didn't know that other people… So, from the mental health perspective, which is part of epilepsy as we've said, I didn't know about other people in my family ancestry who'd had serious mental illness because nobody had spoken about it. And then I found out that somebody, it sounds like from the description - although not diagnosed (and we can't diagnose anybody officially!), but certainly the description sounded very much like a focal seizures when they were a child, but they grew out of it. But they never told anyone ever until that moment.15:52 Cassidy Megan
People weren't able to talk about it. People weren't able to talk about it. They didn't have that safe space to and the knowledge, the proper knowledge.16:00 Torie Robinson
We were talking specifically about India and Kenya and Uganda and… gosh so many countries for two hours! And we all have, a very similar type of epilepsy diagnosed but the experiences can be so different. Do you think we've got a lot to do within certain communities when it comes to removing stigma and improving understanding of the epilepsies?16:23 Cassidy Megan
There's always more to be improved. You know, just like there's always more people being brought into the world…16:30 Torie Robinson
Yes!16:31 Cassidy Megan
…there's always more… there are new people to educate. So, to continue the awareness and education so that it doesn't get back into the shadows, because it's not where it belongs. And I'll give those examples like Africa, people in and places in Africa and India and you know… some of those communities are doing really good and making really good strides and steps…16:56 Torie Robinson
Yes!16:57 Cassidy Megan
…but unfortunately, the stigma and things like that is so rampant still that it's, it is strides and steps that are still being taken. But even if you want to, like, take it away from places like that and take it more to even here in our backyard… Last March, I had someone in... ...Retreton tell me that my body convulses during a seizure because it's this demon holding onto me. My body has such a tight grip that my body is convulsing trying to get it to let go. And I'm like, if you ever need any epilepsy awareness and education, please reach out! Here's my card, here's my number, I'd love to come to your community and help give...help further this education, proper education with seizure first aid and seizure awareness. Because that is not it.17:54 Torie Robinson
Do you know what, I experienced something here in London and I was wearing an epilepsy related t -shirt, hence it came up in conversation. And this chap said to me “I know how to completely control epilepsy and basically cure it.”. And I said “Well, that's interesting, do tell!”. And he said “You just need to get a metal spoon and put it in your pocket and keep it there forever and you'll never have another seizure. That stops them.”. I said “I'm not quite sure about that.”. He was 100% sure that that was a cure for all types of epilepsy, no matter what. And there was no…. The chap was not open to conversation of any kind. So, and yeah, we have these challenges all around the world. Bar this of course, what are your other activities for today, Purple Day?18:45 Cassidy Megan
Today's been amazing! We've been doing lots of postings and lots of sharing people's stories. There's so much happening all around the world. On top of that we had the flag raising and proclamation meeting at our local city hall. There is the Nova Scotia Legislation, their proclamation. In the evening, they're lighting up landmarks - so we're going to do both landmarks in the city and, you know, take photos of them and share them with all of you guys, everyone online! Yeah, I’ve actually… a lot of, I've done a few videos that I sent off for people to play today at their events, so, yeah, I'm really… love seeing all the photos coming through from all that and yeah, sharing them so everyone can see, like, just how much awareness and support there is in this community and how wonderful this community is.19:33 Torie Robinson
Isn’t it, and it's an international community, it's what… - there are of course local communities too - and what I love about the work that you and I do is that the community is getting wider and wider for Purple Day. I'm sharing information about people that I've been interviewing/chatting with over the past sort of three years, amazing scientists, neurologists, statisticians (I almost always say that [(word)] wrong. And, there are people from every part of society, basically, who are involved in epilepsy. And, indeed, hopefully people will get this from this episode; are affected by epilepsy, even if they think they don't know somebody with epilepsy, they probably do(!), because one in a hundred people, approximately, and 4% in some countries, and you don't necessarily see somebody having a seizure, right? So, we have so many types of seizure, 60 different types of seizure, and they're not all shaking all the time.20:33 Cassidy Megan
We talked about, like, the media showcasing seizures (earlier) and how often it's misportrayed, and it is! And it's also hard to portray the other kinds of seizures because they're not all visible! So, then if they do want to bring, like, epilepsy, it's hard because they don't… you always just want to show someone convulsing. You want to show all the other kinds too. And they go with that in the sense of that's the short film that they're making into a feature, trying to make into a feature “Under The Lights”!21:07 Torie Robinson
Oh yes, yes, of course, yes! And I hope that's gonna come off!21:09 Cassidy Megan
I know they're working on getting funding to make it happen…21:12 Torie Robinson
Do you know what, another series, series you should check out is called “Kin” (K -I -N). And we're not sponsored by these people by the way, but, so, “Kin” in reference to, I think to, like, “family”... So, it's based upon an Irish family (I think in Dublin, in Ireland), and one of the members of the family - and they're all dodgy by the way, all like selling [illegal] drugs and stuff(!) - and he develops epilepsy. And he doesn't “just” shake, you can see him having a focal seizure first and then he eventually does physically convulse. But it's the best representation I have seen of an epilepsy to date. And, so, check it out. I can send you the link as well Cassidy, if you want, and if anybody else wants it, let me know. It's really interesting, so “Kin” - check it out.22:00 Cassidy Megan
I didn't know about that! So, I always try to promote like different films and stuff that represent epilepsy properly because it's so important… people… the media is so influential. So, them representing it in the right way and dealing with it… and like having the other people on screen deal with the seizure properly too… It's so, so important because it's so influential. It brings it to the forefront. It's like “Oh wow, look at this!”. Um, there's another film, um, I don't know how much seizures are showing into it, but stories even: there's epilepsy, the film, um, I did a little interview with them when we in BC, and then there's one in… filming through Kenya? I think it's throughout different places in Africa though. It's called The Curse of Stigma and they showed like a 5 minute clip when we were in Dublin. And even just that 5 minute clip was so impactful on what they go through over there. And, they're making it into a feature film, I believe too. So, that's why I don't know how much more they're showing with the actual epilepsy side, but I mean, even in these documentaries, like interviewing people, you never know when, sorry, not everyone knows when they're gonna have a seizure.23:13 Torie Robinson
And also, another interesting thing is when people say “Oh, I get a feeling I'm going to have a seizure,”. That feeling is a seizure! So, even if you feel you have a warning before a seizure you don't really, you've just got the less severe one first!23:27 Cassidy Megan
I'm glad you mentioned that. I'm so xxx that because a lot of people assume… they say “Aura” but because it's “Aura” they don't think that means seizure.22:36 Torie Robinson
Right!23:37 Cassidy Megan
They say it's the warning and yeah the “warning” is, just, like, a smaller seizure before the lead -up or before that the bigger one and sometimes, sometimes people do just have the aura but that is still they just have the smaller seizures and they don't go into the bigger ones, but that still affects them because it's still a seizure.23:55 Torie Robinson
Exactly. And people that… often, they won't declare it when they go to see their neurologist, ‘cause they think “Oh, it's just an aura!” - but that's a focal seizure! That affects your ability to drive still, for instance, you… because you're… it's affecting your, your neurological function, that it's still a really, really big deal. And they didn't used to be considered such, did it, just, like, a few just a few years ago: “Oh, that's just an aura!” And in fact, we know that that is still your brain mucking about a little bit too much24:26 Cassidy Megan
A little bit too much electricity going in one spot!24:28 Torie Robinson
Thank you to everybody who's joined us to now, the end!. And so for Purple Day, let us know what you're doing! If you can comment and/or message us publicly, that will be wonderful, right Cassidy?24:40 Cassidy Megan
Yes, please let us… take us in the post what you guys are doing. Share with us your photos afterwards because even after Purple Day we can still post both your activities that you did!24:50 Torie Robinson
Right, exactly!24:52 Cassidy Megan
I know that like for me, the next two days after Purple Day I am posting still, because the…24:57 Torie Robinson
Yeah.24:58 Cassidy Megan
…there's so much amazing stuff happening. So even if it doesn't get shared on actual Purple Day, today, send it to the next few days because it will, I, we will share them because it needs to be shared. And that's because that's how we're going to share that awareness.25:11 Torie Robinson
Yeah! And I know some people think “Oh, well, I didn't do much. This wasn't a big deal. I might've like… I told my friend…” - that's a really big deal for lots of us.25:18 Cassidy Megan
It is!25:20 Torie Robinson
You don't have to be doing a, you know, a podcast or something to, for something to be a big deal at all. And give yourself credit! And do you know what, if you don't feel like doing anything as well, chill, just look after yourself!25:32 Cassidy Megan
Even, even something as, as small or little as posting a blank purple square on social media, it'd be like “Happy Purple Day”.25:42 Torie Robinson
Really good idea.25:42 Cassidy Megan
And then it takes 5 seconds, you brought awareness, you, you, you helped make a difference in the awareness journey for so many people. And it may not feel like a lot to you, but every little bit counts because it gets us a little bit further than we were in the past.26:00 Torie Robinson
If you could just hashtag #epilepsy as well and then it will come up in our searches as well, it would be absolutely fabulous, and, look, there are loads of epilepsy organisations and we have put a link underneath this recording so if you wanna check out any credible organisations that would be good. Because, we always say “Be careful, don't just Google everything!” ‘cause it's not always the best way to go about finding new information.26:23 Cassidy Megan
Google is an amazing, amazing resource. But, just like the podcasts, like live channels, like streaming services, stuff like that (that you watch or you gain information on), I always say, like, where everyone is different “Ask the questions, make a note of it, bring it to your doctor, then decide.”.26:43 Torie Robinson
Don't make any decisions based upon what we, for instance, say. We are not clinicians and we are not your neurologist.26:50 Cassidy Megan
We are not medical. We are basing off of experiences and experiences we have heard. We are not medical. So, you can take… and everyone is so different - despite our similarities. Like I know how I'm on medication for my epilepsy. Some people don't do medication. Some people do other aspects. There's so many different medications that people can be on that might work for me. It might not work for you. It could work for Joe down the street. Everyone's so different and there's different doses too. So take all this information, bring it to your medical team because they're going to know what's going to help you.27:26 Torie Robinson
And it's okay to ask for a second opinion as well. If you're not quite sure, that's absolutely fine. There are some brilliant neurologists out there, there are some who are not so brilliant. And, you know, and there are epileptologists, which are neurologists that specialise in the epilepsies. And especially if you have refractory or uncontrolled epilepsy, those are the people to go to if you have access, of course. And then epilepsy nurses who are like diamonds out there. So valuable. And, actually, neuropsychiatrists are very important too, who see things from the mental health side as well as the seizure side, which are very, very interlinked.
Thank you for joining us today. Thank you, Cassidy. It's been really fun.28:07 Cassidy Megan
It's been so much fun. Thank you so much for having me on here. I'm glad we were able to do this talk, have this talk. And if there's anything in the future, if you have any questions, we do another one. I'd love to, because there's so much more that we can't cover in this time span. So, in the future, stay tuned for more.28:27 Torie Robinson
Poke us with any ideas that you've got for conversation. We're totally up for it. It'll be fun.28:32 Cassidy Megan
Happy Purple Day!28:34 Torie Robinson
Thank you so much to Cassidy Megan! An authentic fellow homo sapien who sees things from the perspectives of others and values their quality of life! You can find links to Cassidy’s Purple Day website - plus those of many other organisations - through our website epilepsysparks.com
Again, if you haven’t already, and it’s just for today - Purple Day - don’t forget to like, comment, and subscribe, and see you next time! -
Intro
Meet Cassidy Megan - founder of Purple Day
Cassidy's epilepsy diagnosis, school, stigma
Founding Purple Day: how it happened
The diversity of the epilepsies & their impacts
Stigma, independence, careers, memory issues
Worries about SUDEP
Different causes of an epilepsy
Hidden epilepsies
Varying cultural experiences re the epilepsies - e.g. India, Kenya, Uganda, Canada, and UK
Our Purple Day activities!
Media portrayals of the epilepsies
Auras are focal-aware seizures!
Share your Purple Day positivity with us!
Credible sources of epilepsy information!
Brilliant clinicians for epilepsy diagnoses and care!
Conclusion and thanks
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Purple Day: purpleday.org
Epilepsy Sparks: epilepsysparks.com
Epilepsy Action: epilepsy.org.uk
Epilepsy Ireland: epilepsy.ie
Epilepsy Scotland: epilepsyscotland.org.uk
Epilepsy Canada: epilepsy.ca
Epilepsy Foundation: epilepsy.com
Epilepsy Australia: epilepsy.org.au
EpiCARE: epi-care.eu
Kiserem Epilepsy Foundation: kiseremeaf.org
Purple Bench Initiative: purplebenchinitiative.org
Epilepsy India: epilepsyindia.org
Epilepsy Mumbai: epilepsyindia.org
International Bureau for Epilepsy: ibe-epilepsy.org
International League Against Epilepsy: ilae.org