Out of the Shadows: Teens with epilepsy take charge

[Dorchada]

I love this channel. I have been diagnosed with absence (petit-mal) seizures and seizure like episodes. My seizures are caused by my amygdala easily overloading due to it being slightly deformed. I have died twice because of them. But as this video states I try not to let them run my life.

[briandrum1]

My 2 year old daughter has epilepsy, and though I know that a good amount of children at her age "grow out of" having seizures, I'm nervous for her and what life will be like for her when she gets older and the seizures don't stop. Watching this video has really helped me, but what I'm hoping is, for someone in their teens to throw some advise to me and my wife on what we can do to help prepare her for what might come? Thanks in advance!

[tropicalpenguin18]

@briandrum1 I am in my late teens and am a sociology major at a liberal arts college in New York. I have also enjoyed working on neuroscience research at Mass General Hospital in hopes of providing better treatment options for children with epilepsy in the future. I am going abroad to study Spanish and public health in Ecuador next semester. All this is to say that having epilepsy has maybe even enhanced my ability to create an identity that I'm content with. I think that the main...

[tropicalpenguin18]

@tropicalpenguin18 piece of advice that I can give you as a parent is to do what I am eternally grateful my parents did for me: never limit your expectations of what your child can do based on her epilepsy. My parents never questioned whether it was the right thing to let me play violin, ride the unicycle, or send me abroad once I got the thumbs up from my doctor. They just let me live my life as a person who is content and passionate.

[briandrum1]

@tropicalpenguin18 I'm sitting here and trying the perfect way to say thank you, and really, the only thing I can say is...THANK YOU! Knock on wood, she hasn't had a seizure in over a month now. We're not sure if the meds have finally been evened out, or is she's starting to grow out of them. Either way, we're thankful that they have. I do have friends that also have epilepsy, and they too, like you, live a normal life. I guess my main concern is not knowing; "the unknown". Again, thank you!

[BJLindsayGa]

I am so impressed with this video. I wish the internet was around when I was a teen because I felt like I was alone a lot. Don't get me wrong my mom and family were great but it wasn't like they really could understand what I was going through and I really didn't know what they went through seeing seizures until I saw a real one online under a year ago. I got paphlets from the Drs. and stuff and that isn't much for a 12 yr old to learn from or understand.

[DanceLoveLily]

New Hampshire! That's where I was born! I miss New Hampshire ^^ wooh! I liked it for the beaches ^^ I didnt have any friends because of epilepsy.....

[MsKTMvalley]

I'm really glad that teens are reaching out to one another (and beyond) to educate people about epilepsy.

[MrsBieber1144]

OMG what i wouldnt give to meet guys like you ,

[bommerangdave]

I grew up happy from a child, when suddenly my world became a new world for me. I have clon tonic seizures and other types day dreaming etc, its well controlled, I cry all the time being upset was married 21yrs was treated a mental patient and was called a freak so my marriage ended Iam now 51 the epilepsy started when I was 19 the year I got married.I want friends will you be my friend today Iam a nice man age 51 and trying too start a group in my town.I live in Penzance England

[LauraLea38]

I have had epilepsy for 22 years, and have a 3.65 GPA in college and working on getting my CPA in accounting!! Epilepsy DOES NOT affect your intelligence. The only major problem is that it makes me sleepy. Mainly that is due to the medication.

[merlin711oregon]

I have had epilepsy since I was 12 and am now 55, I just recently came out of the shadows. I wish I had support to do it when I was first diagnosed. You are all great for the presentation you have made, well dome.

[jinglejangle32142]

I saw a young man tonight in church. He seemed completely fine, until he had a seizure. It was the first time I'd ever seen anyone have a seizure up until that point, and it was the scariest thing in my life. What was really sad was people were quickly moving away in a paniced way. People are sick.

[19foreverocker80]

I am an epileptic, and have been for about a year. It doesn't stop me from doing karate. It's the best, karate. I have three different types of seizures. Petit mal (Absance Seizures), Partial siezures (I don't know what kid though), and Gand mals (Tonic Clonic seizures). I haven't had kind of those seizures in a while, luckely.

[zebrahattack]

it's not impossible to swallow your tongue, i have epilepsy, i've came extremely close to doing it.

[Emilinepinkie]

@zebrahattack how can you swollow your tongue? Its attached to you. Its the same with other parts of your body. Such as, fingers, hands ears, noes etc.

[zebrahattack]

@Emilinepinkie trust me; its possible.

[talingoh]

@Emilinepinkie This is definitely possible. The tongue is a muscle. Upon loss of consciousness the tongue completely relaxes and falls back to to the larynx. This is why it is critical for persons who lost consciousness to get them moved to the recovery position so that the tongue moves up again. The same applies when reclining the head for mouth-to-mouth breathing. This is done so that the tongue does no longer obstruct the larynx....

[MelissaStarfall]

WELL SOME PEOPLE DO FEEL PAIN LATER THEY HURT THERE HEAD, BACK, ARM, AND STUFF... (IF TWIST)

[lilmissblueeyes1990]

i am epileptic too i have a tonic clonic epilesy i know how they feel but with my epilesy i can tell when one is coming.

but i havent had one for 9 months now and my doctor said it will go away

[artpeacemaster]

I'm 18 i have epilepsy had it since I was 3

[artpeacemaster]

I have epilepsy. I am normal like others, my brain just works in a different way, but other than that I am like everyone else. ALL STICK TOGETHER

[KCFlegend]

One time someone thought I was intellectually disabled because I had epilepsy. But no matter what people say about you never let epilepsy get you down

[selfidentity1]

thanks for posting this. I was diagnosed with epilepsy yesterday and I am freaking out about having to take medication

[naomi9099]

im 15 years old an I have been diagnosed with Epilepsy a few months ago.

[MsPaigem]

i am 13 and i have epilepsy sents i was 7

[MsPaigem]

@MsPaigem i am now 14 and i still have seizures

[BUZZUBUZZU]

i'm 24 and i have epilepsy. tonic clonic seizures. but people often doesn't believe me.

[RawrItsAyrie]

Im 15 and i have epillepsy!

[Filmyfilmyfilms]

Wish I had seen this when I was 12 and I got Rolandic.

[Epigirl1988]

I'm 21 and I'm since 8 years with epilepsy (since 7 years seizure free) and i love the video thats so good!

[kke1997]

im 12, with epilepsy.

[Hetty4Christ]

IT NEVER RULES YOU!!! You shall never allow it to-you should be easily open about it-if we are comfortable to talk about it-others take it much easier!! They don't feel lost or "dumb" -in a way we know more. :) They get in the way if you let them... or if your parents hold you back--make sure your parents are well informed. I was a gymnast for 12 yrs.. great aura prior seizure to get of the balance beam if one would hit-- today I have to be more careful. Never pressured to drink-take charge!!

[sonick3232]

im 13 with epilepsy and this video is good thanks :D

[xAlexCT]

Same thing here, it's horrible.

[bosunbob123]

Anybody know the names of the people in this video?

[mamoderawat]

I have just been diagnosed with secondary epilepsy due to a cavernoma in my head. Had 6 seizures in 9 days, have been scared to leave my house. U guys motivate and inspire me. Although I still hop the surgeons take the cavernoma out.

[slobra669]

thank you so much this is a wonerfull video that every one should watch i have cloni tonic seizurs and it realy sucks ecause i am 20 and i have never been allowed to drive am may never be able to unless i can go 2 yrs with out haveing one that is a long time i hope every in this video has a wonder full and hopefully seizuer free life thank you once again

[cutiecurvy]

as for driving u just dnt need 2 tell in the application for driver's liscence that u have epilepsy... only after u start lessons u just say to ur teacher....when in a driving exam just dnt tell the examiner....then its all cool....with driving what u shud be more concerned about is passing the test!!!!! =P im going 3rd time in a couple of months....=P

[RebirthMeOo]

I feel bad for you.. :/

I've had that kind of epilepsy like 4 or 5 yrs ago... and it was kiinda scary, because I was affraid to have a seizure in front of everyone. :X

But Happily, I've learnt how to "control" it and now I've got a completly normal life. :|

In my ex-school there was a girl with a worst epilepsy case and I got really shocked for seeing her having a seizure while everyone was looking at her judging her for something she couldn't control. :'(

I rly hope you can make it...

[gerryono]

fuck epilepsy

[barnumbaily]

i understand my best friend died at 17 of this and i still miss her. It is so nice to see others like her are not letting this beat them! keep going and live to inspire others!

[1ghostguy]

YOU TELL EM GUYS!

[dawnaloveyou]

thanks for makeing that video becuse im 15 and i have Absence epilepsy its hard to learn becouse i am in 8th grade and i learn on an 2 grade leval and there is people who makes fun of people who have epilepsy its not funny people its hard

[yazafara]

wow this video is so good--my son had seizures for almost 6 years and i can relate to some of their condition-he had absence complex partial seizures--i love all ur attitudes and take one day at a time and do the things that u love!! keep up the gud work-he is 14 now

[kennisings]

This is a beautiful video. My son has epilepsy and it breaks my heart. This is encouraging to see young people having a good time in spite of the illness.

[professorice23]

Thanks for making this video because I lost a friend that had epilepsy and he was only 23.

[kennisings]

That's depressing! I think the point of this video is to encourage those that have epilepsy. Maybe you shouldn't have put that on here. It's not very encouraging. It just makes epilepsy look even more negative. I don't think anyone wants to think about death.

[beeeteeex3]

yes this is soo ture. i have epilepsy so many people at first were like you have epilepsy your contagious and i was like no but now everyone knows but still.

[ZUCMAN74]

Congradulation's on a wonderful video addressing the way Epilepsy affects you. I have had seizures for over twenty years now and am proud to see the positive spin in this video. Thank you for helping to bring Epilepsy out of the shadows.

Dave :>)

VP of Board of Directors - Epilepsy Waterloo Wellington (Ontario Canada)

[gnikeelyk]

yesterday i discovered i have juvenile myoclonic epilepsy & im 13..

[kennisings]

My son was diagnosed with JME at the exact same age. How are you doing? How often are you having seizures and when and how did your first one occur? What's your treatment?

[IrishBarFight]

I feel very badly for the girl that has no warnings that her seizures are coming on. Thankfully, I have a visual aura (and sometimes a "smell" aura). This usually happens between 10 and 30 seconds before I begin to seize, so I at least have a small amount of time to both warn those around me of what is about to happen, and stop what I'm doing/get to a safe place (I try to sit down, no matter where I am).

[stekoy8]

hi zippy go mad man ill take no offence look at a few videos, have a ball man brake a leg.

[kennisings]

huh?

[cutiecurvy]

shall i tell u what some people have told me because of my epilepsy: one says 'omg u dnt look like a zombie!!'. another one says 'all u epileptics are spastics'. another 'wow u look like everybody else'. and many others believe i have a serious disease... goodness me how ignorant can ppl get... by saying all of these they are harming themselves cos they expose their ignorance. but one that really offended me was that someone mimmicked a seizure in front of me thinking it was funny!!!

[kennisings]

yeah...that's really sad and unacceptable. But what comes around goes around. They may have made fun of you but God will probably allow something to come their way in life. It may not be epilepsy but it could be something else just as bad or worse. My son has epilepsy and it breaks my heart. I've always been one that spent time with disabled children so I just encourage my son to be positive and enjoy life!

[zippy3421]

Hey I have a question for people with Epilepsy. I am in a play called "Death COmes to Us all, Mary Agnes" and my character has to have a seizure on stage. I am worried that during the performance I might offend someone in the audience who has epilepsy. Can anyone give me advice on how to accurately portray a seizure without offending anyone? Or any negatvie stereotypes that would offend you if you saw them in a performance?

[daerion85]

Dont worry zippy. We wont get offended =) Theres nothing to be offended about. Most of the time I forget that I have epilesy. The only thing that seperate epileptics from none-epileptics is basicly swallowing tablets and getting enough sleep/avoiding flashy lights. Epilepsy is just like that small mole on your back. You know it's there, but you never think about it!

I say Shake it till you make it, do that play with style. If you can over act and do a lying backflip, more power too'ya! ;-)

[zippy3421]

thanks so much for your feedback!! It really helps a lot.

[kennisings]

LOL!!! I love your attitude! My son has epilepsy and he's a teenager. How often do you have seizures,what type do you have, and what kind of meds are you on? My son is very depressed. I wish he could meet you!

[cutiecurvy]

im lucky cos my seizures get less and less as time goes by. I have had tonoclonic seizures for 4 years. Im on lamictal,frisium and magnesuim. Im sorry what has happened to your son! It takes time to absord what has happened to him but in time with inner strength and support from loved ones he will be fine. He has to convince himself that he can lead a normal life. I did not stop epilepsy from getting my black belt! Your son will flourish with the right mentality. I hope this helps!

[kennisings]

Thanks so much! That's encouraging! I'm going to share this with my son. I hope you keep doing well and keep your positive attitude! That's 1/2 the battle, I think.

[MySeizures]

It's about time society recognizes the agony and devastating effects of Epilepsy as much as it recognizes stroke, cancer, diabetes, etc. After all, adversity is just adversity, one way or the other. Let's raise our voice and root for ourselves as much as rooting for others who can NOT stand for themselves. IT'S ABOUT TIME TO STAND UP & CHALLENGE THE CROOKED SYSTEM.

[elleanor07]

wonderful wonderful!

[mathewedison]

I have a question, is epilepsy commonly inherited or is it caused by other factors? I'm currently doing research for my biology and therefore I would like to know this.

I had a friend who had epilepsy and therefore I decided to use this for my biology essay. I believe that not everybody knows what to do and how to handle people with epilepsy but they are normal people and they should be treated like so.

[nzmarcusm]

There are some genetically passed forms of epilepsy. Unfortunately there are some cases of 'random' afflictions.

[cutiecurvy]

ye like mine was completely out of the blue...nobody ever had epilepsy in ma family

[Monochrome89]

You can get epilepsy from pretty much anything.

inheriting it from a family member ie genes, hitting your head really hard causing scaring on the brain which will manifest itself over time causing seizures or being born with a single or multiple sists on your brain

[cutiecurvy]

mum doesnt let me lock the door wen im in the shower...

[tntalus]

seizures with psychological background exist but are NOT epilepsy. Epilepsy is neurological

[Seccnightelf]

Well I have swallowed my toungue but not literally swallowed swallowed it, just it went back far.

[kabelstege]

how the hell can you try swallowing your own tounge if you are unconsious???? WTF!?

[cutiecurvy]

yes u cnt swallow it but u can bite it. it happens 2 me on some seizures

[nzmarcusm]

swallowing the tongue just means the muscle relaxes to the back of the airway, obstructing it... not ideal. air is pretty awesome

[cutiecurvy]

i can relate to what they are saying. Someone spread rumours that i was retarded believe it or not, but thank god most didnt believe dem!! When i told a friend i had epilepsy they were like 'u dont look epileptic!' then i said 'how does an epileptic look like?' and they were like 'i dunno'. god ppl can b sooooo ignorant!!!! I had seizures in class twice...ppl were scared...as for sport ye why shud i stop what i love???

[Lineofdeath2]

actually, epilepsy is a neurogical problem

[lucy328]

a person in my family has Epilepsy..

[MySeizures]

Hi Paula, how are you doing lately? Have you ever thought or considered that Brain Surgery might cure or reduce your seizures? Did you ever asked your neurologist about Brain Surgery to cure your epilepsy? Check it out with your neurologist or any other sources of Brain surgery in curing Epilepsy and see if it helps. Frustrated of 10 years old seizures, medications and side effects, I'm demanding for Brain surgery, knowning that I've 70% chance to stop my seizures.

[MatthewFordVictoria]

News for the guys in this video that say they want to be doctors.

There's a doctor in my city who started having seizures after a stroke, and lost his license to practice medicine, for the slight chance that he might have a seizure while treating someone, or even worse... while operating on someone.

So if you think you're going to medical school, don't be surprised when they turn you down for public safety reasons.

[MySeizures]

Gregeliz, Your boss is an Angel. I wish I had worked for him/her all my life. After working two jobs for 30 years I feel I've been used & disposed, when I'm down & out. just like many Americans. See Micheal Moore's film "Seick" & you will be surprised the inhumanity of this nation.

[LadyAngelaGray]

My job tried to get rid of me because I have seizures, fortunatly for me it's illegal to deciminate, and I have doctors and legal council backing me up.

[MySeizures]

My Job of 10 years got rid of me 2 years ago & ever since no one want to hire me. I lost my ho home, my car, my driving privledges, my wife & I became home homeless. And the SSI rejected my applications. Epilepsy has been a nightmare that destroyed my life & I'm NOT sure if I will ever be able to have a normal ordinary life I use to have for most of my life. It looks like it's the end of me, not that I complaining.

[grgeliz]

I'm lucky to have finally found an Employer who sat down and talked to me with my Supervisor and told me to not worry about being fired for my Epilepsy. My co-workers all got training on how to react (not over react) if they see me have a seizure. They should remain calm and just have me sit down for about 3 minutes until I'm conscious once again and get back to work

[MySeizures]

Gregeliz, Your boss an Angel. I wish I had worked for him/her all my life. I feel I've been used & disposed, when I'm down & out. just like many Americans. See Micheal Moore's film "Seick" & you will be surprised the inhumanity of this nation.

[MySeizures]

Seizures are hell, I live them every day. Sad there isn't much could done about seizures even though seizures has been around for thousands of years before CANCER & AIDS. Too bad the governments don't care to find solution for Epilepcy as much as for Cancer, Diabets, AIDS & heart disease. Live or die, it seems we are on our own. Seen better days before seizures.

[vikingheads]

bollocks crap video you pick the best looking people to put a more approachable fluffy feel to it, Short edits good lighting just makes it look so false and something thrown out from the mtv real world,