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The Purple Truth



Epilepsy by TheLeavesOfMemory


March 26, known to the epileptic community as Purple Day, is a day to promote understanding and teach others the signs of epilepsy and seizures. As one of the most common neurological conditions in the world, directly affecting 65 million people globally, and with 1 out of 10 people having suffered a seizure in their lifetime, this condition has a real presence in our lives. What is epilepsy though?

Epilepsy is defined as a medical condition that produces seizures affecting a variety of mental and physical functions. Normal brain function is made possible by millions of tiny electrical charges passing between nerve cells in the brain and to all parts of the body. When someone has epilepsy, this normal pattern may be interrupted by intermittent bursts of electrical energy that are much more intense than usual.

A seizure, a symptom of epilepsy, occurs when a brief, strong surge of electrical activity affects part or all of the brain. Seizures can last from a few seconds to a few minutes. They can have many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs.
—Epilepsy Foundation

I am very passionate about creating bridges of understanding, but epilepsy is especially close to my heart. I've been discriminated against, misunderstood, and been in several perilous situations because of the condition that affects me.

Epilepsy Awareness by red8771 Awareness Icon: Epilepsy by DisturbedMediocrity


Stages of a Seizure



The most severe type of seizure I suffer from is the one that is most often portrayed in media, and involves the person having it to "seize" and then "convulse". This is the shaking most commonly associated with epilepsy. There are actually two stages before the convulsing occurs, though these stages do not occur for everyone with epilepsy.

There is the aura, where an epileptic person may become nauseous or even gain temporary synesthetic tendencies (words may have smells, sounds may have colors), and then there is the tonic phase, in which a person tenses the muscles in their body and loses consciousness. This usually lasts only a few seconds and the person may moan or scream when doing this due to the air being expelled from their lungs. Despite this phase's short length, this is often the most dangerous part of the seizure, as a person is more likely to injure themselves by falling and through other mishaps.

The most known stage of a seizure is referred to as the "clonic phase" and consists of the affected person convulsing, or "shaking". The most this phase lasts is often only 2-3 minutes. If someone is convulsing from a seizure, here is the proper first aid:

  • If the person is near any potential hazards like the side of a pool or busy street, block their way. Do not hold them down!
  • Remove any potentially dangerous objects, such as a tie or anything sharp, if you can. A good idea is to set any objects behind you.
  • Place something soft under their head to prevent further head or neck trauma (they should be on their back or side while convulsing).
  • Do not insert anything into their mouth! Contrary to popular belief, you cannot swallow your tongue during a seizure.
  • After the seizure, lay the person on their side and stay around until they are fully conscious and aware of the situation.
  • Most importantly, time the seizure. If it lasts for more than 4-5 minutes it is time to call an ambulance. Anything less is usually not as serious and recoverable from. However, if they have difficulty while recovering, then you should contact emergency medical services or take them to a hospital.


Epilepsy Awareness bow by DamienMuerte


My Story



When I was 12 years old I had my first known seizure. The seizure was a type known as a grand mal, now referred to as tonic-clonic. The seizure left me bruised, sore, bloody, and scratched up. My heart rate would randomly race for days after the seizure.

I've had seizures in the oddest and most dangerous of places: movie theaters, a busy crosswalk of a city street in Washington D.C., in the shower, and in my 8th grade English class. Not all of these were grand mal seizures where I convulsed, but they were significant petit mal seizures that affected my life greatly.

In Washington D.C., while crossing a busy street, I suddenly lost consciousness and began walking in circles to my left (out into the intersection). My family was with me, and fortunately for me, a man in a car recognized what was going on and got out to direct traffic around me. It was traumatizing to learn that my life was being risked in a way that I couldn't defend from.

In my eighth grade English class I suffered another petit mal seizure which caused me to lose consciousness and start spouting off slurred gibberish. The school reprimanded me for my actions, saying they were "inexcusable". I was suspended for two days and sent to a lower class level for it. My family was furious and my mother argued with the school on several occasions about the event.

There are other seizures that happen to me frequently as well, such as when I am reading a book or story and the letters begin to quit making sense and I am forced to stop reading for a period of time. There are moments where everything feels "thick" around me. But there are always those who are curious as to what I suffer, and whenever someone asks me what my seizures are like, I tell them that it is like tensing every muscle in my body past the point of comfort until they will be sore for weeks.

:thumb334562802: Epilepsy Awareness Earrings by Geisha-Neko



What is Your Story?







Have you ever been treated differently because of an illness/disability or vice versa? Has epilepsy affected you or someone you know? How have you dealt with these things? Share your stories in the comments.


Please be respectful of those with epilepsy, any comments with images or links to images that are sensitive to those with the condition will be hidden immediately. It is important to note that only a small fraction of seizures are caused by photosensitivity.

Thank you for reading and for your understanding, if you would like to further spread the word of epilepsy awareness, wear purple March 26th— through online avatars or real life clothing. This journal skin is available to use here:


Epilepsy Awareness Journal Skin by Nichrysalis

:iconheartpurpleplz: Nichrysalis


Resources, Clubs and Groups



Epilepsy.org
International League Against Epilepsy
International Bureau for Epilepsy
Epilepsy Foundation
Epilepsy Therapy Project
Purple Day Organization
American Epilepsy Society
Epilepsy Society of UK
Epilepsy Australia

:iconepileptics-anonymous: :iconepilepsy-awareness: :iconepileptic-artists: :iconitdoesnothaveme: :iconraiseawarness: :iconarts-and-health:

March 26, known to the epileptic community as Purple Day, is a day to promote understanding and teach others the signs of epilepsy and seizures. What is your story with epilepsy?
Add a Comment:
 
:iconworldwar-tori:
WorldWar-Tori Featured By Owner Mar 12, 2014   General Artist
:wave:Hello, I'm just stopping by to let you know your news has been listed in the latest update of deviousNEWS. Have an awesome day!
Reply
:icontimeywimeystuff13:
timeywimeystuff13 Featured By Owner Oct 5, 2013  Student General Artist
Such a touching story. I have petit mal epilepsy, which is nowhere near as severe as grand mal, but it can still be life-threatening. I understand.
I had it for almost two years before I started taking medication for it, and it was steadily getting worse (or at least I think it was. Maybe my mum just started noticing it more.)  Anyway, one morning I was walking down to the station to catch the train to school, and I was in the middle of a really busy road when I blanked out. Luckily I don't fall over when I have those seizures, so I was just going in really slow motion, but when I came to I had no idea where I was. I only realised because my mum was with me. 
Now things are better. But still, people don't realise how dangerous even petit mal seizures can be.

Thank you for making people more aware of epilepsy and seizures. I hate how we are discriminated against because of these things. So thank you again, and I hope you stay happy and safe for the rest of your life.
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:iconnichrysalis:
Nichrysalis Featured By Owner Oct 5, 2013  Hobbyist Writer
No, thank you for understanding! :love: I hope you stay happy and safe yourself too. :hug:
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:icontimeywimeystuff13:
timeywimeystuff13 Featured By Owner Oct 6, 2013  Student General Artist
You're welcome :D
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:iconglassheart93:
glassheart93 Featured By Owner Jul 14, 2013  Hobbyist Traditional Artist
what a touching story i hate when we are being discriminated against our illnesses as if its not enough to have to go through what we are going through !! i once skipped a week of uni because i had to stay in hospital under observation any way when i went for the clinic to get it accepted so i can hand it to my professors the doctor didn't sign it and i had a mini melt down and started crying!! i was telling her that i'm freakin' straight A student (well i was for that semester :P) you can't do this to me isn't it enough that i have to deal with this now you are punishing me !! well after a second thought it wasn't discrimination as much as its stupid !!
kindly enough most of my professors accepted that and even offered to repeat all the lectures for me (how sweet is that :)).

oh one more thing when i was little i used to have seizures when i got a fever (which was most of the time :P) but its gone now .... of course my mom told me i don't remember that but your journal reminded me :P

i absolutely love the awareness that you are doing many of the things that you've said i didn't know and i wish you a very happy and safe life :hug:
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:iconnichrysalis:
Nichrysalis Featured By Owner Jul 14, 2013  Hobbyist Writer
:tighthug:
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:iconglassheart93:
glassheart93 Featured By Owner Jul 14, 2013  Hobbyist Traditional Artist
lol so cute <3
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:iconterramoo:
Terramoo Featured By Owner Jul 12, 2013  Hobbyist General Artist
I think it was nice that that man help direct traffic during one of your seizures. I don't think it was fair for the school to suspend you. And put you down a level to. I wish you the best of luck with your epilepsy and other condition.
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:iconnichrysalis:
Nichrysalis Featured By Owner Jul 13, 2013  Hobbyist Writer
I never got to thank the man. He did a very thoughtful thing. :happycry:
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:iconterramoo:
Terramoo Featured By Owner Jul 13, 2013  Hobbyist General Artist
Agreed.
Reply
:iconphoenixdestruction:
PhoenixDestruction Featured By Owner Jun 13, 2013
I have featured this in a Get involved Journal. [link] :)
Reply
:iconnichrysalis:
Nichrysalis Featured By Owner Jun 14, 2013  Hobbyist Writer
:love:
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:iconlost-angle:
lost-angle Featured By Owner Mar 29, 2013  Hobbyist General Artist
While I do not have epilepsy, I do have an undiagnosed movement disorder. (Doctor's have run a battery of tests and all have come back clear, leaving us all stumped.) My shaking usually starts in my hands or feet and then migrates up my arms/legs to my shoulders/hips and back. It's tensing and impossible to control where my limbs are pointed when they're shaking. The short ones last a couple seconds or minutes and barely make it to my shoulders. The bad ones take over my whole body. People who have seen me have assumed I'm shivering (to the point of offering me blankets or jackets to stay warmer). The worst one I've had lasted 3.5 hours; I went to the hospital and was sent home without any diagnostic/treatment because I was "just shivering" and it would go away and I'd be fine.

While it's not epilepsy, it should remind you that there are a lot of movement disorders out there, and epilepsy is just one of them. A lot of movement disorders go undiagnosed or can be seen as drunkeness, disorderly behaviour, and "normal" involuntary action (like shivering).

:heart:
Reply
:iconnichrysalis:
Nichrysalis Featured By Owner Mar 29, 2013  Hobbyist Writer
A lot of movement disorders go undiagnosed or can be seen as drunkeness, disorderly behaviour, and "normal" involuntary action (like shivering).

Definitely. :nod:
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:iconlost-angle:
lost-angle Featured By Owner Mar 29, 2013  Hobbyist General Artist
(I'm just glad that I'm medically recognized as having "something" wrong, which took all of 6 years of doctor visits, hospital visits, tests, and complaints to be taken seriously, because "you're just shivering.")
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:iconpurplephoneixstar:
PurplePhoneixStar Featured By Owner Mar 28, 2013  Hobbyist General Artist
I had my first seizure at 13 and for about 5 years afterwards it was in remission until October 2008 the seizures came back and to this day, I haven't found a way to get the seizures back to how they used to be. Probablly the medication. I was on Depakote then but switched to Lamictal then to Keppra they work pretty good but not as good as I need. A lot of my personal freedoms like being able to go where I want, when, being able to drive etc is hindered.
Reply
:iconanothernamelessone:
AnotherNamelessOne Featured By Owner Mar 26, 2013
Thank you for raising awareness. I didn't know that epilepsy is so common, but that makes it even more unbelievable that so many people still don't what to do when they witness a seizure.
A friend of mine has epilepsy due to a brain tumor. We used to spend a lot of time together, so I learned early on how to behave in such a situation. I've ever only been around him once when he had a seizure, though, and we already were in a hospital then, so even though it was really scary, it was interesting to see how the nurses handled him.

One thing confused me, though. I have learned that, though the tongue can not be swallowed during a seizure, they can bite down on it and cause severe injury to it. I was told that I should make sure that the mouth is open so that they cannot bite their tongue.
Reply
:iconnichrysalis:
Nichrysalis Featured By Owner Mar 26, 2013  Hobbyist Writer
Biting the tongue is very common with tonic-clonic seizures, it's actually the reason why people have heard you should place something in their mouth, is to prevent them from biting their tongue. It used to be common medical practice to do that, but then patients were choking and causing themselves even more severe injury.

To answer your question though, you shouldn't physically try to open their mouth. If they are clenching their mouth, it is very likely they could be biting their tongue. At that point, you'll need to make sure they are on their side instead of on their back. The reason for that is in case of bleeding. It's always more advisable to have someone convulsing on their side because they can bite their tongue or they may vomit.

I hope this helps. :love:
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:iconanothernamelessone:
AnotherNamelessOne Featured By Owner Mar 26, 2013
Yes, thank you for the explanation.
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:icondamienmuerte:
DamienMuerte Featured By Owner Mar 27, 2013  Hobbyist Digital Artist
In fact, if you meet someone in a seizure that causes them to bite their tongue, you have no chance to open their mouth or to put something inside. Its like a bear-trap, you would need much strength to do so and cause severe injury to the gums or teeth ^^;;
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:iconmangosquirrel:
mangosquirrel Featured By Owner Mar 26, 2013  Student Traditional Artist
This was really helpful for me to read because my family is close to another family and their eldest daughter has been struggling with epilepsy for about 8 years. I've learned what to do when she seizes, but this helps me to understand what she's going though as it happens. thank you~
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:iconnichrysalis:
Nichrysalis Featured By Owner Mar 26, 2013  Hobbyist Writer
I'm glad this article helped and I hope your friend can bring her epilepsy under control.
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:iconpearwood:
pearwood Featured By Owner Mar 26, 2013  Hobbyist Photographer
No epilepsy, but our son *RobertTryon had non-epileptic seizures fairly often when he would spike a fever. Thankfully they were the sort kids generally grow out of as they get older. We met the ambulance at the ED on a several occasions when he had one at school. I remember the awful feeling of helplessness as we waited them out.

Blessings,
Steve
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:iconnichrysalis:
Nichrysalis Featured By Owner Mar 26, 2013  Hobbyist Writer
I'm glad he was able to grow out of them. In fact, a majority of people who have a seizure may never have another one or may grow out of them. A lot of people don't seem to understand that epilepsy doesn't have to be a permanent condition.

But you're sure his wasn't related to epilepsy? If I remember right, epilepsy is decided by two factors: 1) recurring seizures 2) a low seizure threshold. Most people have a high seizure threshold, which, even when experiencing triggers for brain activity, their activity is not enough to cause any types of seizures, whereas a person with a low seizure threshold will become overwhelmed more easily by their triggers than others.
Reply
:iconpearwood:
pearwood Featured By Owner Mar 26, 2013  Hobbyist Photographer
His neurologist said they were febrile convulsions. Due most likely to other developmental issues (he's 34 now, and in a superb group home), Rob took longer than usual to get past them. He still gets annual trips to the neurologist.
Reply
:iconnichrysalis:
Nichrysalis Featured By Owner Mar 26, 2013  Hobbyist Writer
Oh I see. I'm somewhat similar in that I was expected to outgrow my seizures about two years ago, and still am, but I have other issues myself which I won't delve into right now that are prolonging my epilepsy. I can always try weaning off my meds and see what happens, but the reality is that the human brain undergoes some more development until around the ages of 24-26 (I turn 20 in April) that are likely to lower my seizure threshold. So in the next few years I should know if I'll be living with this the rest of my life or not.
Reply
:iconpearwood:
pearwood Featured By Owner Mar 26, 2013  Hobbyist Photographer
Hang in there. It's a tough road.
Reply
:iconnichrysalis:
Nichrysalis Featured By Owner Mar 26, 2013  Hobbyist Writer
Thanks. :)
Reply
:iconzebrazebrazebra:
zebrazebrazebra Featured By Owner Mar 26, 2013  Professional Writer
I linked this to someone else already, but I think you'll enjoy it, too: [link]
Reply
:iconnichrysalis:
Nichrysalis Featured By Owner Mar 26, 2013  Hobbyist Writer
I did. :) Her story is quite moving, and tells a lot about our culture. Hopefully, the newer generations will be made aware of different conditions such as epilepsy, and a lot of the stigma will die down.
Reply
:iconzebrazebrazebra:
zebrazebrazebra Featured By Owner Mar 26, 2013  Professional Writer
To be honest, I didn't really know about it. I experience illness stigma all the time--I suffer from bipolar, borderline personality disorder, fibromyalgia, HS, IBS and hypothyroid, and apparently there are even people freaked out by friggin' hypothyroid--but I just never thought about epilepsy in that way. But of course it makes perfect sense. A condition that in certain very rare and easily hyped up circumstances can be dangerous to other people (driving) + poorly understood causes + crowd consciousness = get the pitchforks, villagers!

Nobody is their illness. And nobody chooses their illness. And people need to goddamn grow up.
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:iconvigilo:
Vigilo Featured By Owner Mar 27, 2013  Student Writer
:thumbsup:
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:iconneurotype:
neurotype Featured By Owner Mar 26, 2013  Hobbyist General Artist
HOW DO WE MAKE THEM GROW UP
Reply
:iconzebrazebrazebra:
zebrazebrazebra Featured By Owner Mar 26, 2013  Professional Writer
GROWTH HORMONES
Reply
:iconneurotype:
neurotype Featured By Owner Mar 26, 2013  Hobbyist General Artist
So then they understand disabilities cause now they have like five. NICE.
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:iconnichrysalis:
Nichrysalis Featured By Owner Mar 26, 2013  Hobbyist Writer
Yus! :la: THAT.
Reply
:iconpoetrylion93:
poetrylion93 Featured By Owner Mar 25, 2013  Student General Artist
I like this article. I used to have epilepsy, thankfully I outgrew it. In the end, I think having epilepsy made me stronger.
Reply
:iconnichrysalis:
Nichrysalis Featured By Owner Mar 25, 2013  Hobbyist Writer
It's good to hear that you outgrew it, I have a possibility of outgrowing mine as well. But I am definitely stronger and more perceptive for having it. :hug:
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:iconpoetrylion93:
poetrylion93 Featured By Owner Mar 25, 2013  Student General Artist
I hope you can outgrow it someday too. :):hug:
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:iconnichrysalis:
Nichrysalis Featured By Owner Mar 25, 2013  Hobbyist Writer
Thank you, that means a lot. :huggle:
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:iconwhenpigsfry:
WhenPigsFry Featured By Owner Mar 25, 2013  Hobbyist General Artist
Thanks for sharing this, not just your story, but also the information about this condition. I found the 'tips for dealing with someone having a seizure' very enlightening. My first instinct would have been to hold the person, but it makes obvious sense to not do that once you think about it.

When I get home this evening, I'll get my avatar changed up to support the cause.
Reply
:iconnichrysalis:
Nichrysalis Featured By Owner Mar 25, 2013  Hobbyist Writer
Yes, you don't want to do that, you'll do more harm than good. Thank you for the support! :)
Reply
:iconwhenpigsfry:
WhenPigsFry Featured By Owner Mar 25, 2013  Hobbyist General Artist
Great timing, just got my piggy all purple!
Reply
:iconnichrysalis:
Nichrysalis Featured By Owner Mar 25, 2013  Hobbyist Writer
:squee:
Reply
:iconwhenpigsfry:
WhenPigsFry Featured By Owner Mar 25, 2013  Hobbyist General Artist
:iconpurplelaplz:
Reply
:iconconniekidd:
conniekidd Featured By Owner Mar 25, 2013  Hobbyist General Artist
Thank you for sharing this. :tighthug: It's a lovely article, and very informative - I really didn't know much about epilepsy before reading this. :noes:
Reply
:iconnichrysalis:
Nichrysalis Featured By Owner Mar 25, 2013  Hobbyist Writer
:love: Thank you for reading! Did anything in particular you didn't know stand out to you?
Reply
:iconconniekidd:
conniekidd Featured By Owner Mar 25, 2013  Hobbyist General Artist
My pleasure :cuddle:
The majority, actually. I hadn't heard a lot of the first aid tips before, and I had little knowledge of different types of seizures that can occur.

It's a really well written article overall, and I hope it raises a lot of awareness. :happybounce:
Reply
:iconnichrysalis:
Nichrysalis Featured By Owner Mar 25, 2013  Hobbyist Writer
So do I! :tighthug:
Reply
:iconselahdenoctiluca:
SelahDeNoctiluca Featured By Owner Mar 25, 2013  Hobbyist Writer
:huggle: I don't know much about epilepsy, and I wanted to tell you that your story really taught me something. Not just about you, but about other people I might meet who suffer from the same thing.
Reply
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