epilepsypositivity Photos & Videos

1 hour ago

Kyllian will be admitted to UCLA again tomorrow for another VEEG. Although we have not seen any activity, we are worried about her. Something is not right. She doesn't act the same, she doesn't eat the same. I'm afraid. We will be meeting with the neuro team and her GI to have some serious talks. Please pray for her. Please pray for Mom and Dad. Please pray for her medical team. 💜 #kyllianray #bravelittlewarrior #togetherwearestrong #pachygyria #epilepsypositivity #advocatelikeamother #careaboutrare #esophagitis #figureoutable #gerd #interuterinegrowthrestriction #iugrsurvivor #juvenilespasms #keepgoingstrong #medicallyfragile #micropreemie #nottodaysatan #prematurelungs #rarewarrior #rarebrain #rareisreal #specialneedsmom #teamhandsanitizer #whenyouhearhoofbeats #zebrafamily

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4 hours ago

Repost from @smartmonitor using @RepostRegramApp - Harrison Ford Talks About Epilepsy and Seizures - Ford's Daughter Lives With Epilepsy. Ford spoke in honor of Dr. Orrin Devinsky at the New York University (NYU) Langone Medical's Center's annual Finding A Cure for Epilepsy and Seizures (FACES) Gala. Watch it here: https://www.epilepsy.com/article/2016/3/harrison-ford-talks-about-epilepsy-and-seizures . . . Source: @epilepsyfdn Epilepsy Foundation of America >> http://ow.ly/X4pn30nTrqI . #epilepsywarrior #EndEpilepsy #seizure #seizuresmonitoring #epilepsystrong #seizurealert #fightepilepsy #epilepsymatters #epilepsypositivity #staypositive #epilepsycommunity #peaceofmind #epilepsysupport #epilepsylife #epilepsysurvivor #famouspeople #artists #HarrisonFord

262
5 hours ago

I've been epileptic since I was 9 and it was well controlled until last year. I started a new tablet in January and had to titrate from 250mg to 1000mg daily. I'm now on the full 1000mg and my new meds are making me feel so tired, moody and emotional. Work's really tough right now too, the ward is busy and I'm on my feet for 14 hours. I just want to sleep all the time. I can't even begin to explain how scary it feels knowing you can't control your own brain, like it doesn't work the way you want it to, I don't feel normal. It sucks but as long as my epilepsy gets under control again then I'll be happy. Think positive and positive things will happen ✌🏼🍀💞💜💫 #epilepsyawareness #epilepsypositivity

344
6 hours ago

Harrison Ford Talks About Epilepsy and Seizures - Ford's Daughter Lives With Epilepsy. Ford spoke in honor of Dr. Orrin Devinsky at the New York University (NYU) Langone Medical's Center's annual Finding A Cure for Epilepsy and Seizures (FACES) Gala. Watch it here: https://www.epilepsy.com/article/2016/3/harrison-ford-talks-about-epilepsy-and-seizures . . . Source: @epilepsyfdn Epilepsy Foundation of America >> http://ow.ly/X4pn30nTrqI . #SmartMonitor #SmartWatchInspyre #epilepsywarrior #EndEpilepsy #seizure #seizuresmonitoring #epilepsystrong #seizurealert #fightepilepsy #epilepsymatters #epilepsypositivity #epilepsymom #staypositive #epilepsycommunity #peaceofmind #epilepsysupport #epilepsylife #epilepsysurvivor #famouspeople #artists #HarrisonFord

493
12 hours ago

3/23 “I don’t let one word define me” That’s the spirit! Being a wife, mom, daughter...etc she still stands super strong! Keep it up Jess 💪💜 . . . . Epilepsy has effected me by I see a neurologist & an epileptologist on a regular basis. Due to my seizures not being controlled, I’ve had my right temporal lobe removed twice. One surgery resulted in a stroke & one was successful. I’m currently taking two medications & seizures. Yes. I am epileptic, but I don’t let one word define me. I’m a wife, mother, daughter, etc....

432
14 hours ago

Who's pumped about #purpleday2019 ?? Please help us make a difference by sharing and talking about International Epilepsy Awareness Day on March 26. Can you share with us how you've been fundraising about Purple Day? We'd love to hear from you! #purpleday #countdown #EpilepsyActionAus

1435
1 day ago

Let's change the world on Purple Day, March 26th! Abby got involved in Purple Day last year by selling merchandise in her local community. Just like Abby you can join our battle against Epilepsy by simply clicking the link in our bio.

1072
1 day ago

3/22 All the way from Sweden meet Mr.Oskar. One guy who is positive at all time of the day. Stay positive Oskar 💪💜 . . . . Greetings from Sweden my name is Oskar, im turning 20 in less then a month and i have had absence siezures since i was 16 but i wasnt diagnosed untill i was 19 after i began experiencing myclonic and tonic-clonic siezures, something wich still haunts me today. Luckily hope has always been on my side, im a musician and The day after i got home from the hospital i was accepted to study jazz at a folkhögskola and my year has despite The epilepsy been The best throughout my life.But it did mean new challanges, information about epilepsy isnt publicly avalble so ive had to bee my doorms guide on how to help me, some have taken my advice some have not, The low-point in dorm life with epilepsy came when someone pulled The firealam at 1:30 am, luckily my roomate is awesome and helped me to a safe place. Its been a hawowing journy and even though i no longer can drive cars and barley be in a kittchen i know that if i jeep playing my sax everything will work out one day! May hope be one The side of all fighters out there, whatever that fight might be against!

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1 day ago

4 days to go till Purple Day... Is your office going Purple?? We want to do a big shout out to all our supporters for getting their offices involved in our battle against Epilepsy! Morning teas, wearing purple days, raffles... there are actually lots of fun ways to celebrate Purple Day with your colleagues. We’d LOVE to hear what your office is up to this year for #purpleday2019.

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1 day ago

We came and watched the presentations at the Purple Day Talks today at Royal University Hospital 💜 I was glad to hear the presentation on Medical Cannabis on Epilepsy 💜 I volunteered to my Neurologist to share information their researchers, I hope that they contact me soon. Please spread awareness about Epilepsy and continue to shine bright while being a wonderful work in progress!💫 #epilepsypositivity #epilepsywarrior #epilepsycbd #epilepsyawareness #purpleday2019 #purpleday #saskepilepsyprogram #saskatchewanepilepsyprogram #mmjpatient #mmjepilepsyfighter #ptsdrecoverypositivity #complexptsdrecoverypositivity #keepshining #workinprogress

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2 days ago

In Portland on a business trip and thought I’d stop in and take a picture of my brain! #totallynormal This is me making light of the situation because it helps me deal. So yes, hospital selfie at the risk of not being taken seriously.....I’ve been not taking my body seriously for too long so here we are. A simple sinus cold increased my seizure symptoms and put me more at risk. Just a reminder to take care, take rest and listen to your body and spirit when it speaks....or else it’ll start yelling! 😉 . . . . #selfie #selfcare #selfcareselfie #epilepsyawareness #epilepsypositivity #ohsubrain

389
2 days ago

Happy Friday fellow Purple Warriors!! 🤗🤗 We all have had a powerful comeback since learning about our epilepsy. 👊🏻💟 We all know what a challenging setback is and how to conquer mountains we never once could. 👏🏻💟🤗 Stay strong and courageous like the lion you are!! 🦁💪🏻🤗 Always here to talk to!! 😘😘 • • • • #seizurewarrior #endepilepsy #seizureadvocate #epilepsyadvocate #epilepsylife #talkaboutit #epilepsy #seizure #seizures #purplewarrior #epilepsyawareness #epilepsypositivity #epilepsysupport #epilepsyfighter #epilepsystrong #epilepsyadvocate #epilepsyaction #purplewarriors #epilespywarriors #bebrave #bebravebrain #bebravebrains #endepilepsy #epilepsyeducation

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2 days ago

I very much thank Carol D’Souza from the Samman Association for mentioning me in their blog! It was wonderful to meet and speak to such an inspiring, friendly group of people in Mumbai! . . . . . #epilepsy #mumbai #epilepsymumbai https://ecellin.wordpress.com/2019/03/02/epilepsy-clinic-support-group-meeting/

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2 days ago

Come join us at the @westonymca on April 13th and 14th at 10:30 AM. Jordyn Salbe is hosting a spin cycle fundraising event where you can purchase raffle items including our very own gift basket (pictured below). Tickets are $20.00 and you get one free event t-shirt. You can purchase the tickets at the Weston YMCA. You do not have to be a member! Let’s help Jordyn reach her goal to fill 80 seats. If you can’t attend, you can also make a donation at http://support.efof.org/site/TR/Walk2019/General?team_id=1950&pg=team&fr_id=1160.

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2 days ago

Letter Y #BeyondTheSeizures A list of potential impacts/parts of epilepsy which aren’t always recognised. Thanks to our volunteers for helping to come up with this list. If have any experiences of these impacts which you would like or share or anything to add to the letter ‘Y’ list, feel free to comment below (note: everyone has different experiences with epilepsy and these may not apply to everyone!) ☺️ #epilepsyawareness #epilepsypositivity

1782
2 days ago

Letter X #BeyondTheSeizures A list of potential impacts/parts of epilepsy which aren’t always recognised. Thanks to our volunteers for helping to come up with this list. If have any experiences of these impacts which you would like or share or anything to add to the letter ‘X’ list, feel free to comment below (note: everyone has different experiences with epilepsy and these may not apply to everyone!) ☺️ #epilepsyawareness #epilepsypositivity

1981
2 days ago

Letter W #BeyondTheSeizures A list of potential impacts/parts of epilepsy which aren’t always recognised. Thanks to our volunteers for helping to come up with this list. If have any experiences of these impacts which you would like or share or anything to add to the letter ‘W’ list, feel free to comment below (note: everyone has different experiences with epilepsy and these may not apply to everyone!) ☺️ #epilepsyawareness #epilepsypositivity

22915
2 days ago

6 days to go till Purple Day... We’d LOVE to hear what you are up to this year! Approximately 3% to 3.5% of Australians will experience epilepsy at some point in their lives and over 250,000 Australians are currently living with epilepsy... YOU have the power to save lives simply by helping us in our battle against Epilepsy.

1081
2 days ago

@homeandaway and Epilepsy Action Australia have been working very closely to ensure an accurate portrayal of Raffy’s storyline of developing epilepsy. Home and Away has acknowledged that Epilepsy Action Australia is one of the leading authorities on epilepsy education in Australia, so they consulted us to ensure that the portrayal of Raffy Morrison in the small screen is entirely accurate – Raffy happens to be a pivotal character in Home and Away. Here’s a quote from Home and Away confirming this: “We know that lots of people with epilepsy will be watching Raffy’s journey on Home and Away. We consulted with Epilepsy Action Australia to ensure the storyline was medically accurate as they are one of the leading authorities on epilepsy education in Australia.”

1615
2 days ago

So happy I could be apart of @wkbw and AM Buffalo spreading epilepsy awareness today 😀 Link in bio 👀

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2 days ago

Letter V #BeyondTheSeizures A list of potential impacts/parts of epilepsy which aren’t always recognised. Thanks to our volunteers for helping to come up with this list. If have any experiences of these impacts which you would like or share or anything to add to the letter ‘U’ list, feel free to comment below (note: everyone has different experiences with epilepsy and these may not apply to everyone!) ☺️ #epilepsyawareness #epilepsypositivity

2609
2 days ago

For those in the South Bay area, @i_epilepsy is having an event at Dale Page park in Redondo Beach on Purple Day!! 💜💟👏🏻 Please see second photo for more details!! Go check out her page too!! She does amazing live videos too!! 👏🏻💜💁🏼‍♀️ • • • • #seizurewarrior #endepilepsy #seizureadvocate #epilepsyadvocate #epilepsylife #epilepsy #epilepsyawareness #purpleday #epilepsywarrior #epilepsypositivity #epilepsyfighter #bebravebrains #epilepsyfighters #seizure #seizures #purplewarrior #purplewarriors #talkaboutit #epilepsylife #epilepsysupport #epilepsystrong #epilepsywarriors

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2 days ago

PURPLE DAY GIVEAWAY!! Go check out @christallebodiford live video that filmed earlier this morning for more details about winning a SeizureLink device!! 💟💜💁🏼‍♀️ Great for those who have grand mal/tonic clonic seizures. • • • • #seizurewarrior #endepilepsy #seizureadvocate #epilepsyadvocate #epilepsylife #seizurelink #giveaway #epilepsygiveaway #seizurelinkgiveaway #epilepsy #epilepsywarrior #purplewarrior #purpledaygiveaway #talkaboutit #epilepsypositivity #epilepsyfighter #epilepsysupport #epilepsystrong #fighter #epilepsyawarness #seizureawareness #epilepsysociety

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2 days ago

If you are a medical professional who works with Epilepsy or Pediatric Epilepsy, you might find this video panel helpful. ⠀ Dr. Michael R. Sperling, M.D., questions a panel of doctors on how they view the expanding armamentarium for epilepsy. Epilepsy medicine - including relatively new medicines to medicines that have been used for 15+ years, is helping medical professionals understand more about and treat the disease better, with each passing year. If you have a child suffering from Infantile Spasms and need help understanding the right approach, please call us. We are here to help!

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2 days ago

FIRST AID - RECOVERY: First aid is incredibly important and I wanted an easier way to remember what to do. If you want to find out how to put someone in the recovery position, visit @epilepsyaction , @epilepsysociety or the NHS website. • • • • • • • • • • #epilepsy #epilepsyawareness #epileptic #epilepseed #epilepsypositivity #epilepsywarrior #epilepsyaction #epilepsysociety #seizure #seizures #epilepsysucks #seizuressuck #seizuredisorder #epileptic #design #graphicdesign #pen #fineliner #sketchwork #sketchbook #sketch #sketching #instagram #instadoodle #illustration #illustrations

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3 days ago

3/21 “try and stay positive and if you get bullied stay strong”-Libbie! She is a super strong young lady and I for one admire her attitude! Stay positive and don’t let the bullies get to you 💪💜 . . . . Hello, so my name is Libbie I’ve been diagnosed with epilepsy since I was 7, I have 4 types of seizures. Absence, grand mal, clonic, and atonic, and when I was 8 years old I lost my memory from a bad seizure. And I had to move to a special needs school to get my memory back, I got it back but I don’t know a lot of things. I am 13 years old and I am very brave. I have been strong as I can be through everything that has happened. I only really have one type of seizure now and it’s the absence. And I moved to a different school after I got my memory back and I got mocked and bullied for having special needs. If you are going through what I went through, try and stay positive and if you get bullied stay strong💜

395
3 days ago

Day 21: Letter U #BeyondTheSeizures A list of potential impacts/parts of epilepsy which aren’t always recognised. Thanks to our volunteers for helping to come up with this list. If have any experiences of these impacts which you would like or share or anything to add to the letter ‘U’ list, feel free to comment below (note: everyone has different experiences with epilepsy and these may not apply to everyone!) ☺️ #epilepsyawareness #epilepsypositivity

2199
3 days ago

I took my daughter to see her neurologist the other day, we didn’t get the best of news. More testing and more medication to take. Trying to get her seizures more under control is hard. It takes its toll not only on my daughter but the family as a whole. I walked to the fridge and saw this note she wrote on my dry erase board. “Love God!!” She is strong in her faith. She is my warrior. 💜💜💜. #lovegod #epilepsy #epilepsyawareness #epilepsywarrior #epilepsysucks #ilovesomeonewithepilepsy #family #momstrong #momanddaughter #epilepsypositivity #jesuschrist

160
3 days ago

We never cease to be amazed by the resilience these young warriors have. With the right support -- from real information to the right pediatric epileptologists -- young lives like Baby Kinsley's can absolutely be saved... and look at that smile! #WarriorWednesday

511
3 days ago

This time next week it’ll be #purpleday2019 ! If a kid like Harry can make a difference then you CAN. Meet Harry, last year he worked extremely hard to raise awareness and funds for Epilepsy - he went above and beyond getting everyone involved throughout his school and community. Just like Harry, you can also join us in our fight against Epilepsy simply by clicking the link in our bio.

1203
3 days ago

سال ۹۷ نقطه ی عطفی در زندگی ایلیا بود.... با رنگ بنفش و روز جهانی بنفش آشنا شد رنگی که نماد آگاهی درباره ی صرعه و روزی که متعلق به خود خودشه،. دوستان جدیدی در داخل و خارج از ایران پیدا کرد. با گروهی آشنا شد که دغدغه های مشترکی باهاشون داره و به اون و نیازهاش اهمیت می دن، انجمن صرع که حمایتشون از ایلیا تا به الان بی نظیر بوده و همه ی اینها رو مدیون صرعیه که داره💜 @iranepilepsy @purpledaymarch26 گاهی یک واقعه ی بد شما رو به سمت رویدادی خوب هدایت می کنه. همه چیز به نوع نگاه شما بستگی داره که دنیا و رویدادهاش و چطور ببینید! امیدوارم اگر دوست ، آشنا، همسایه و خلاصه شخصی رو می شناسید که مشکل تشنج داره و این تشنجها تکرار میشه اولا به دکتر متخصص مغز و اعصاب معرفیش کنید. دوم اینکه بهشون برچسب نزنید. سوم اینکه در نظر داشته باشید که هر ساله صد و پنجاه هزار مورد جدید از بیماری صرع شناخته میشه و هر کسی که مغز داشته باشه در خطر ابتلا به بیماری صرعه. پس طیف وسیعی از افراد و درگیر می کنه که سن و جنس هم نمیشناسه. مهم یک موضوعه و اونم اینکه افراد مبتلا به صرع باید خجالت و کنار بگذارن و در مورد بیماریشون صحبت کنن. صرع شرم آور نیست درمان پذیر هم نیست ولی با دارو قابل کنترله و فرد می تونه زندگی عادی داشته باشه.. در حال حاضر شعبات زیادی از انجمن صرع در شهرهای مختلف از جمله کرمانشاه، ایرانشهر، گنبد کاووس ، جیرفت، بندرعباس و ... راه اندازی شده. افرادی که مبتلا به صرع هستن می تونن به شعبات انجمن صرع شهرشون مراجعه کرده و عضو بشن و از خدمات مختلف این مراکز بهره مند بشن. برای همه ی شما دوستان همراه، سالی توام با شادی و سلامتی آرزو می کنم💖💜💜💜 سال نو مبارک🌹🌹🌹 #صرع #آگاهی_درباره_صرع #بنفش #رنگ_بنفش #نوروز #نوروز۹۸ #سال_نو_مبارک #انجمن_صرع_ایران #مبارزه_با_صرع #مبارز_صرع #purpleday #purpledaymarch26th #purple #happynewyear #iraniannewyear #epilepsy #epilepsyawareness #epilepsypositivity #epilepsywarrior #epilepsyadvocate #supportepilepsy

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4 days ago

Proud I had the opportunity to be able to go on @wkbw and AM Buffalo to spread epilepsy awareness. Check it out tonight and tomorrow morning at 10:00AM #neverstop

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4 days ago

Day 20: Letter T #BeyondTheSeizures A list of potential impacts/parts of epilepsy which aren’t always recognised. Thanks to our volunteers for helping to come up with this list. If have any experiences of these impacts which you would like or share or anything to add to the letter ‘T’ list, feel free to comment below (note: everyone has different experiences with epilepsy and these may not apply to everyone!) ☺️ #epilepsyawareness #epilepsypositivity

30313
4 days ago

3/20 “but that’s not gonna stop me from living my life” Yo Abby well said!!! A teenage girl who I am sure every teenager can relate too! I know I can. Stay positive and fight on warrior💪💜 . . . . I was diagnosed at age 14 one year after I car accident. When I figured out my first neurologist allowed me to drive.. it was all new to my family and I so we went for it. Later on I turned 15 and got a second opinion. Hearing the words I could never play sports again made me depressed. He soon suggested a second opinion. My new neurologist didn’t not allow me to drive which made perfect sense. Later on they started to get more aggressive and life threatening. They put me on Onfi and it started to help a little bit. After week long EEGs I had a few clear EEGs. Almost to 16 I wasn’t 6 months free. I thought there was no point into doing anything because all my friends could stay out later than me, go to school dances, and have fun times. At age 16 I finally just wanted to give up. With help of my community, friends, and family I got through it. Now I’m 17 taking 9 pills a day not able to drive but that’s not gonna stop me from living my life.

544
4 days ago

“It relaxes me, it keeps me in a good state of mind, it helps me to achieve. It’s good to see the finished product when I do my art” . Adrian Harms of BBC Radio Surrey came down to ARTHOUSE last week and caught up with artist David Spencer, exploring his grippingly drawn expressions of his reality of living with epilepsy. @bbc.co.uk

602
4 days ago

Posted @withrepost @epilepsypositivity Day 19: Letter S #BeyondTheSeizures A list of potential impacts/parts of epilepsy which aren’t always recognised. Thanks to our volunteers for helping to come up with this list. If have any experiences of these impacts which you would like or share or anything to add to the letter ‘S’ list, feel free to comment below (note: everyone has different experiences with epilepsy and these may not apply to everyone!) ☺️ #epilepsyawareness #epilepsypositivity

110
4 days ago

Posted @withrepost @epilepsypositivity Day 18: Letter R #BeyondTheSeizures A list of potential impacts/parts of epilepsy which aren’t always recognised. Thanks to our volunteers for helping to come up with this list. If have any experiences of these impacts which you would like or share or anything to add to the letter ‘R’ list, feel free to comment below (note: everyone has different experiences with epilepsy and these may not apply to everyone!) ☺️ #epilepsyawareness #epilepsypositivity

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4 days ago

Posted @withrepost @epilepsypositivity Day 17: Letter Q #BeyondTheSeizures A list of potential impacts/parts of epilepsy which aren’t always recognised. Thanks to our volunteers for helping to come up with this list. If have any experiences of these impacts which you would like or share or anything to add to the letter ‘Q’ list, feel free to comment below (note: everyone has different experiences with epilepsy and these may not apply to everyone!) ☺️ #epilepsyawareness #epilepsypositivity

80
4 days ago

Posted @withrepost @epilepsypositivity Day 16: Letter P #BeyondTheSeizures A list of potential impacts/parts of epilepsy which aren’t always recognised. Thanks to our volunteers for helping to come up with this list. If have any experiences of these impacts which you would like or share or anything to add to the letter ‘P’ list, feel free to comment below (note: everyone has different experiences with epilepsy and these may not apply to everyone!) ☺️ #epilepsyawareness #epilepsypositivity

80
5 days ago

3/19 This is Kara -my older sister She was there when I had my first seizure at age 10 and has been helping me ever since. I am forever thankful for her fast thinking and good heart💜 Love you😚 . . . . My story to tell: My sister has been dealing with epilepsy for many years and her seizures have been triggered by various causes throughout the years. I’ve become watchful for some of these especially whenever something like a bright flashing light happens in a movie or somewhere around me. I immediately tense up and my mind jumps to being ready to protect and save mode even when I know she isn’t with me.

605
5 days ago

3/18 Wow! Jason is a fighter! I’ve never read of a story quite like that. Keep on fighting Jason 💪💜 . . . . Well not much to tell if was working on a normal day in November 1991 then all of sudden the Scaffolding as was on Collapsed 35ft up the next thing I was in a Daze and I could here something run behind me as I lay on the floor, I had Just Cracked my head open, Just the start of my problems, that's how I got Epilepsy through a head injury 💜💜💜

242
6 days ago

3/17 Ruby! Now this is one warrior who has put everything into the fight! And now she is “Teens Speak Up” representative for Nebraska. That’s the way to do it! Keep fighting 💪💜 . . . . I’m Ruby and I was diagnosed with epilepsy at the age of 10. My mom noticed I was having absence seizures for the first time when I was stirring a boiling pot and just stopped. We had an EEG and I was diagnosed. I had my first grand mal seizure about 6 months later. I was having around 30 absence seizures every morning and the occasional grand mal while on 28 pills a day. I then had the VNS placed and exactly 6 months later, I became seizure free. I was seizure free for 2 1/2 years and off all meds for nearly a year. This November I started having seizures again, both absence and grand mal. I am on meds again and am trying to regain control. I am 14 now and am proud to say that I have been chosen as the Teens Speak Up representative for Nebraska. I don’t think very many people realize that there are other struggles besides seizures that epileptics face. I am on a mission to bring awareness to epilepsy one step at a time.

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