YOUR STORIES  - SMALL SNIPPETS


Below are a selection of small snippets that have been sent in as we also love to share where people are currently at with their journey

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Once a month on our Instagram page we will be asking users to share small snippets of their epilepsy journey. Whether you are a patient, sibling, parent, carer, partner, friend or have an alternative connection with epilepsy, we would love to hear from you!

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JANUARY AND FEBRUARY 2019

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"Between the last two months I have been able to finally come off one of my medications and finally am allowed to get my permit πŸ’œ" -@diana_kaziu

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"February 20th was 4.5 years seizure free and still going strong. 😊" -@manatee_9lives

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"In February, I realized I haven't had a seizure in a year!" -@last_chance_streetcar

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"I continued to have focal seizures and got lost in my own apartments parking lot in December, during my menstrual cycle so we upped my onfi .5. I now take Keppra, trileptal, onfi, and started norethindrone (a birth control that skips the week of my period) in January. Ativan as needed (only after a seizure Bc I tend to go into status epilepticus) it’s been a busy and long two months I’m still hanging in there. Foggy minded and all. πŸ’ŸπŸ’ŸπŸ’Ÿ" -@lara_flare

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"On Jan 15,2019 it has been 8 years since I was on life support (for 3days), for having 13 seizures in less then 30 mins." -@kidatheart22

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"3rd medication in the last 6 months is actually reducing seizure activity finally !! Not eliminating them, but down to a couple tonic clonic a month. Still several partials a week, but finally a step forward." -@bc_coast_4life

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"February 3rd was 3 months seizure free! This is a new record for me and I’m still going strong!" -@anna.is.jinxxed

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"As of February 23rd, 2019 after 7 years of having seizures I have not had a seizure in 11 months. πŸ’œ" -@ashleebug_

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"I’ve been taking/changing medications for about 4 years and none of them are helping. Just last week, I had six seizures in one day" -@rissyroooh

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"April 19th would have been 2 years seizure free, sadly a few days ago I had my first one since April 2017 and have temporarily lost my driving licence, just a note for anyone who may experience what I have... Do not let it get you down, stay strong and always think positive. It will work out in the end!! πŸ™Œ" =@mikemilne1

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"On the 3rd I will be 3 years seizure free!!πŸ’ͺπŸ’œ" -@sunflowersntacos

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"I have absence seizures that resulted from an anoxic brain injury. I take medication that has slowed them down but not stopped them. I had a Vagus Nerve Stimulator implanted in January πŸ’œ" -@swellheart

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"February 8th was my 1 year seizure free milestone!" -@amymtaylor23

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"I am so blessed to be here living this life with my love πŸ™ŒπŸ»πŸ˜πŸ’― Especially after seizing at wheel.. I don’t ever want to drive again!! #epilepsywarrior πŸ’œπŸ’œπŸ’―" -@mrsdolce713

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"I’ve been seizure free since 2005... 14 years! I was on Topamax during that time, and I was desperate for a change. The mood swings and lack of concentration ruined my relationships, especially with my boyfriend. I wanted a change, so my neurologist recommended Lamictal. I was so scared to change because I thought I would have an episode during the transition. My neurologist convinced me to do it and the transition took about 4 months. It was suspenseful! I am very happy with the transition. My relationships are good and I feel confident! A change for the good πŸ€—" -@kotomisi

 

"After having right anterior temporal lobectomy surgery 2/11/19 I've been seizure free for ther first time in over 15+years. This coming Monday will be 3 weeks and hopefully we'll still be counting after! Fingers crossed!" -@cnembrey89

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NOVEMBER & DECEMBER 2018

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"This November I did my first public post about my epilepsy! I used to be hesitant to talk about it because of what people would think and how they would treat me differently, but I chose to speak out for the sake of all of us and to lessen the stigma around this condition and educate others. It was met with so much overwhelming support and many fellow sufferers contacted me both publicly & privately thanking me & sharing their own stories & asking questions. This was so special to me and made it all worthwhile. I want to do more in the future! Power, strength & love to all of us affected by epilepsy xx πŸ’œβœ¨" -@chloeauztron 

 

"I have had a tough year and it was very stressful but it was seizure free (grand mal). However, I still have some other, smaller seizures" -@sophia_ank

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"I was three years strong and ended up in the hospital on December 19th. They strengthened my Keppra dosage as a result.....and my Doctor had just sent my paperwork over for me to keep my license! This has definitely been a huge set back but I'm able to smile through it all because I still have my life. Epilepsy doesn't have me!!!!" -@forever_robby27

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"Neurologists can't control my Epilepsy, been having lots of seizures, even Christmas day I had 2. Crossing my fingers that I can have surgery, awaiting date for VEEG then once that's done I'll find out. 🀞🀞" -@suegayler 

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"A couple of days ago, my keppra got reduce from 1000mg to 750mg. The reason being that they want to try and take me off off of it or have the smallest dose possible because it’s effecting my mood negatively and I’m doing well with the 1000mg so by increasing the Lamotrogine too, my neurologist is reducing my Keppra" -@serina_lall 

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"My hope is that my friend who has epilepsy will get the help she needs, her family is not aware that it would be better for her to go to a hospital that could offer her more like I do. I’m on more medication then she is and I still have seizures and also have the vns. She only is on two medications and the VNS, has a seizure almost everyday and has been scared to apply to college but I’m pushing her to not give up" -@peaceloveswim94

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"In December I reached 8 months seizure free, the longest i've ever gone!πŸ’œπŸ’œπŸ’œ" -clairvoyantcarmellas

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"After 5 years of uncontrolled seizures and tonnes of medicine, my daughter has been seizure free for 25 months. We are so happy! Her grades have improved, she’s able to drive now and she’s able to lead a more normal life." -@cathlay

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"My son is doing a little better,they put him now on 2 anti seizure meds. After his brain surgery he got down, thinking he will never be seizure free. It's been 10 days and still figuring strong.i have helped him think positive again. Maybe his 21 birthday in March he can have better results .." -@francis70.skt

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"December 22nd marked one year seizure-free! I've only done that a few times since I was 18, I'm 53 now. So now I'm trying for two years. : I don't think I've ever gone two years except for the five years from age 13 to 18." -@lisaleadbeaterhetherington

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"We are almost at the 2 year seizure free anniversary for my son!! So excited!!πŸ’œπŸ’œ" -@amandasky34

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"Taking medication everyday to control my seizures has completely turned my life upside down. I think, feel and just totally act different. I feel like a zombie some days and others like I’m putting on a mask just to communicate with others. I understand I need to take something to stop the damage that a seizure does to my brain but why must it be so life changing and hard?... it shouldn’t be this way." -@justadrizzleofrain

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"I  am 4 months seizure free as of December! My seizures have been controlled for 4 years but I forgot to take one dose of medication in early August and my life got turned upside down again. I don't like being medicated and taking pill after pill but staying seizure free is a HUGE blessing so I can't complain too much." -@kikilyn7

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"My Son is 10 years old and has been having absence seizures since June. Last week he had his first grand mal seizure. We called 911 and an ambulance took him to the ER. It was the most terrifying moment of our lives. Since then I have been filled with fear and worry that it will happen again. He is currently on 1,500 mg of meds and we are praying so hard for the seizures to stop." -@ky_and_lillies_momma

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"2.5 months seizure free!" -@supernotlindsay

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"Hello my epilepsy survivors! I've never posted anything about my epilepsy on social media. So this is my first time putting my self out here..here it goes....My name is Griselda Aguirre (she,hers,ella). I have been seizure free for 10 years!!! I got out off my meds about 4 years ago and I recieved my driver's license two years ago. I earned 3 Associates in Sociology, Interdisciplinary: Social Sciences and Interdisciplinary: Social Behavior and Development. I'm currently studying sociology and I am expected to graduate Summer 2019!!! Woot woot! I am in the process of applying to Grad school for the MSW program to then precede my journey toward completing a doctoral degree or law degree. It hasn't been a smooth journey (it still isn't) and I'm sure everyone can relate but nonetheless, I'm moving forward whether I'm running, walking or crawling I'm moving ! Also, surrounding myself with strong, intelligent and courageous people like yourselves help me keep striving for success! Please don't give up! We must continue breaking barriers and help one another along the way! Adelante! :)" -@___griselda_aguirre___

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"After years of being told that I couldn't get pregnant due to brain damage my seizures have caused, we had a happy, healthy baby girl in November." -@jessb0423

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"Hi everyone. I am a brain tumor survivor and wrote my first book. It’s called “Weird Girl With a Tumor” and is available on Amazon. I hope it can inspire and help others going through similar experiences I did!" -@sierra03rose

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"My son was nearing 20 months seizure free and then he has been having seizures weekly. There’s no rhyme or reason to this! So frustrating." -@mrsmartinho94

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"In December I'm 3 months seizure free😍" -@chelseamaguire16

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"Headed to Mao Clinic in February. Psyched about that!" -@georjisue

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"300mg of Lyrica & 100mg of Briviact. Still have complex partial seizures at least 2x a month but a lot better than 4x a week. Tried every medication & a lot of them I was allergic to. Epilepsy Specialist/Surgeon says She still wants me to do presurgical MRI 01/2019 , and have the intracranial EEG 03/04/2019. Scared but...I can’t allow Epilepsy to beat me. It may get me down more often than not but I can’t give up." -@mirabel1er

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"November was when I was diagnosed 13 years ago with epilepsy and for December I’m 6 years and 2 months seizure free" -@chelseap24

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"Please check out a glimpse of my project “Seize” on my website(find the site at the top of my page), I’m writing a book to go along with the rest of the project and hopefully a lot more to come πŸ’œπŸ““πŸ“Έ" -@dhop.photo

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OCTOBER 2018

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"I haven't had a seizure in 6 months πŸ˜Š still shocked that things have to change to work around it but soon get over the anxiety im hoping x x" -@laurie_tailsxox

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"My meds give me insomnia. 2 nights in 2 years I've managed to sleep after 0500 just this past month! -@aspuckett10

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"In October I reached 83 months seizures free" -@cdollar13

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"Successful brain surgery cured my son two months ago." -@hb_surf_team

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"I reached a year of being seizure free πŸ™πŸ’š" -@u_4_x

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"In  October I reached six months seizure free πŸ’œ" -@clairvoyantcarmellas

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"In October I reached 11 years seizure free! πŸ’œπŸ’œπŸ’œ" -@caseywaugh

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"I learnt how to deal with my symptoms properly" -@doris_amollo_

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"Educated a couple individuals about Epilepsy and Seizures Disorders. Gave others Hope that you can live with itπŸ’œπŸ’œπŸ’œ" -@always_adventures

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"A whole year without a seizure! πŸ˜Š" -@imlongpre

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"My name is Emma Simpson and I am 6 months seizure free! I have also been battling with anxiety due to my fear of having a seizure in public and have beat that with no help of medications!" -@emma.simps

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"Been told that soon I'll be getting the cannabis treatment." -muffincat642

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"I was 8 months, almost 9 months seizure free. My doctor cleared me to get my permit. πŸŒ»πŸ’œ" -@kleedominique

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"4 years ago on October 31 I had my first seizure πŸ’œπŸ’ͺ🏼" -@sandyypie19

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AUGUST & SEPTEMBER 2018

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"In September I reached three years seizures free πŸ˜" -@georgiebrazier

 

"I was 14 years cancer-free and 9 months seizure-free both on the 13th of September of this year πŸ’œ Thanks for providing a community of support, love, knowledge, ad positivity on IG @epilepsypositivity ! To many moreπŸŽ—πŸ˜Š" -@nicoleevansfit

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"8 months seizure free! On my way to getting my drivers license back. Keep your fingers crossed for me!🀞🀞🀞" -@little_birdy_web_design

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"I walked 100km along Thames path non stop and raised over £1000. Then topped it off with daughter achieving year seizure free!" -@byrne6272

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"12 years seizure free!" -@matthew_r_moore 

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"My 3 year old daughter just finished a 24 hour EEG in the hospital (a difficult task in itself!). But it was worth it, she had a completely normal EEG! She no longer has spiking in her deep sleep, and she's 3.5 years seizure free (started at 5 months old)." -@purplebuterfly1821

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"24 April of this year I had brain surgery so I'm almost 6 months seizure free now!!πŸ’ͺ 🌈 In August I already went on a vacation to Thailand I've never had so much energy!! And the energy level is still getting better😊😊" -@sofie.berge.honnef

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"This past weekend I made it to my πŸ’œ 1 year seizure free πŸ’š" -@u_4_x

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"August I hit 2 years seizure free 😁" -@janeliveshere

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"I managed to make it through the entire September seizure free and I'll be 7 weeks seizure free tomorrow! This is the longest I've ever gone before I'm over the moon😊😊😊😊😊" -@_laurax66

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"First time having an abnormality on an EEG thus proving that despite my first diagnosis I'm not anxious, I'm epileptic! Also started my first AED" -@epilepsy_memes

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"I had brain surgery 7 years ago. I've been seizure free since. I still have fears (being able to accomplish something and remember things is a struggle for me now) I'm here for anyone who wants to talk. I started an epilepsy group in  Ma. It was a place to be yourself and not feel alone. We would talk about anything. It's not all about epilepsy it's more about a friendship. I  moved to Austin Texas 1 1/2 years ago and want to start another someday." -@mel01915

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"I had a SEEG procedure 2 weeks ago. Results were good, and I am scheduled to have brain surgery to receive a neuropace (RNS) next month." -@carrielynn424

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"Aged 17-24, I suffered eleven 'pseudo seizures', suggested the neuro who dragged a psych into it, which promoted my second opinion that landed me in the EMU, clearly diagnosed with Epilepsy. 8/2/2018. So many emotions come with this disorder, but with the help of doctors, family, the ep foundation, and each other we'll make it πŸ’œ" -@amperrino

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JULY 2018

 

"On 2nd July my partner reached 1 year seizure free! Hoping to learn to drive soon." -@caroliner90

 

"My daughter Sophia is 5 and has reached her 2 year seizure free πŸ’œ been having seizures since she was 6 months old due to a gene mutation!" - @_deniserios

 

"I'm just over 1 month seizure free!" - @pearson2044

 

 "I got the news that after 10 years worrying about being able to drive with epilepsy, I got the go ahead and am going for my license!❀️" - @tiana_keen

 

"Seizure free since November 2016 πŸ’š positivity is key πŸ”‘" - @stephhawlor92

 

"I walked up Ben Nevis, Snowdon and Scafell Pike raising money for Epilepsy! πŸ’œ" - @mollycoupe

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"JULY i have made seven months seizure free and i only caught one seizure. On my July 2nd appointment doctors approved me to drive. πŸ’œ" - @slim_thiqk_

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"My daughter is 6. She had her first seizure at 9 months. She was just diagnosed with Dravet Syndrome which is a very rare form of epilepsy." - @krissybellabee

"I found out I get to drive again in 3 months! Just have to keep my blood sugar in check so I don’t have anymore seizures πŸ’œ" - @samantha_molner

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"I am now 4 years seizure free." - @cathy.miller.73

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"I reached 5 years seizure free on July 17th!" - @jordak24

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"My nocturnal seizures are coming from my temporal lobe." - @jess.lv23

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"My son can tie his shoes. He has had some fine motor skill issues due to his seizures." - @summerbushnell

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"We celebrated one year seizure free (my six year old daughter) last month! πŸ™πŸ»πŸ’œ" - @andrearamosaustintxrealestate

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"I started keppra June 18th after released from giving birth I had Terrible seizure, been seizure free since !" - @amberinafaye333

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"Instead of 3000mg of keppra (before surgery) im now taking 1000mg. I'm a year and 2 months seizure free since taking my right temporal lobe out due to impacted scar tissue and nerve damageπŸ’œπŸ’œπŸ’œπŸ’œ" - @_lilbootybb_

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"In July, my son who suffers from nocturnal epilepsy coming from the left frontal lobe, started his medication (carbamazepine). Fingers crossed for a positive outcome...." - @mehz_karim 

"If I reach July 25 without having a seizure I will be 2 months seizure free." - @happy_savvy

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"I graduated with a honours degree despite struggling since being diagnosed at 12! Super proud! Reach for the stars everyone." - @aimeejohaddow

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"I am 1 year seizure free with my license back and finally driving again." - @tamilove24

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"On July 10 Bryce Danielson was 13 years seizure free!!" - @unicornmomoftwo

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"Our home is seizure free 4 years this month πŸ’œ so blessed! But we’ll always and forever #helpfindacure #alwaysfighting" - @melissacaldwell12

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"July 20th 2018 my son Antonio took his last seizure medication pillπŸ’œ" - @t2oo4

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"On July 3rd, I became 2 years seizure free!πŸŽ‰" - @nele1299

 



JUNE 2018

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"A year and a half without a seizure." - @christina.vergara

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"Epilepsy changed my life, the struggles and challenges made me who I am and I am pround to be me. 105 days seizure free and counting. -@deanna_kuhn

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"Tried and failed 4 medications, incubated 7 times in two years. Now I'm a year out of my last hospital stay. ER Nurse pursuing a masters degree to be a neuro NP. Epilepsy may kickme down, but it can't keep me down. I will always rise." - @clairedoeslife

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"Always maintain hope and never give up. I have several loved ones who have had various types of seizures. They are all seizure free and medication free. The seizures may return but...for now they are all gone. Never give up." - @_always_adventure

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"Epileptic Mum of two. My kids are cool. It's a battle of pills nap and coffee." - @_babyteeth_

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"8 years seizure free." - @kyleeerayeroberts

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"Epilepsy is a journey you are never prepared for but with hope and faith you will end you journey and be able to live a seizure free life you are never alone even when you feel low you are always someone who is there to listen and support you (seizure free since 2016) no 14 year old should understand like I do." - @cayden_koenig

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"Epilepsy may suck but in the long run it makes us stronger and the people we are today. Stay strong." - @heatherperl10

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"My boy is four and is two weeks seizure free he's been diagnosed since 15 months old he wakes up everyday with a smile and fight everyday without knowing he is. He's truly a star. We love him more than words xxx" - @kel_astill

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"Never give up hope. Even when there seems to be none. Things can change. I was having seizures monthly and unable to hold a job and m now 20 months tonic clonic seizure free. My memory has been affected and yes there are some awful side effects of meds but finally I'm finally working again as a nurse and I'm grateful for every shift I do. You are not alone. P.S. If you're not getting anywhere with your neurologist or team feel free to get second opinion. Mever hurts" - @jfelicitymack

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"Epilepsy will make me a better doctor because it has given me the ability to feel the gravity of a diagnosis from the patients side and earn empathy and patience on the doctors. #6monthseizurefree" - @andreaglennon

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"I haven't had a seizure for many years now it's been so long since I had one. Never give up fighting." - @byetton2004

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"I was diagnosed in 2016 along with Lupus and antiphospholipid syndrome (now 34 years old), from the UK. I lost my job due to health and lack of support from employer (worked as a teaching assistant at this workplace for 8 years - was rated as a top TA and as soon as I was diagnosed, my employer said I was becoming a burden to the school, one of the most heartbreaking moments as I loved working with kids. Even though my energy and determination was always 110% even on my bad days I would literally crawl back to work (as my body was drained from seizures). In the end I left as I found my worth. It made me more aware of how 'disability' is looked at. I became stronger, resilient, volunteered on with charities, never looked back at what was or could have been. My old colleagues stuck by me and till this day we are still friends and see each other often! I have made more new friends, in and out of hospital but smile regardless. I made each day count and each moment last. I am now employed. Energy is contagious so is drive and ambition - we have epilepsy but that doesn't stop us nor define us. We are still people will personalities full of hope, enthusiasm and determination...more so than those with good health. We fall seven, stand up eight! We still lead normal lives, with a bit of adaptation now and then. #blessed" -  @craziisam

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"My daughter was diagnosed in 2010. She has two types of seizures - epileptic and non-epileptic. We have tried several meds she is on 2 now and has the non-epileptic seizures more often. I have her in epilepsy counselling to try and control them. Prayers with everyone and my daughter as well." - @lilcuytee


"5 years seizure free after a year of misery having 6-7 seizures a day. It's a journey but you're stronger than you're disease." - @alyssaleelambert

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"Looking into different ways of forming a family now we've been told we definitely can't while I'm on sodium valporate and I can't come off it. We'll have our family some way, some day but maybe just not the way we thought we would've originally." - @make_way_fat_girl_running

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"It's been 17 years since Epilepsy got me. And now, in October they are giving me surgery! I have lost hope a lot of times, BUT I haven't given up! And look where it got me." - @rmspanier

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"Seizure free for 2 months! Yes, I may have epilepsy, but it does NOT have me." -@malorielizabeth12


"Life is not about it getting better or easier. Life is about providing meaning. For me, life is about being part of the future smiles, lagihs, and good times shared with others. You like those too, right?" - @momofschochuyu

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"I have been recently diagnosed in January 2018, it has turned my world upside down, however, I have just completed university and will be starting my Masters in October...never give up hope! #sixweeksseizurefree" - @fabulous_grace

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"I had my first seizure when I was 8. Now at age 41 I have been 3 months seizure free (longest in my life) after having brain surgery in March. Feeling very blessed." - @pimp.my.brain

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