One week seizure free! Eye appointment with Mom on Monday. Second pheno decrease tomorrow (going every week and a half). Yay for a weeks victory! 💜 #dravetwarrior #epilepsywarrior #dravetsyndromeawareness #epilepsyawareness #epilepsymama #dravetmama #dravetmamaofhope #raiseawarness #gopurpleforepilepsy
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2 weeks away! It will be an amazing event. Share share share to help raise awareness! #Repost @liv@livingforkimberly with @get_repost ・・・ JOIN US! Tickets are $25 and all proceeds will help to support @livingforkimberly and @epilepsynewengland! To purchase tickets, go to: lfk.eventbrite.com (link in bio). If you'd like to donate a raffle prize, please email Jaimee Chace (jaimee.chace@gmail.com) or Lauren Weigold (lauren.weigold@gmail.com). Complimentary ticket per donated raffle item. Let's #lightthewaytoday and celebrate Kimberly's beautiful life in her favorite way: with all of you dancing with her favorite band, @7dayweekendband 😀 Thank you, thank you, thank you for your continued support! 💜 #epilepsy #sudep #sudepawareness #LFK #epilepsyawareness
3 1
What a terrible photo! I decided to Facebook Live my backwards run today and this is a screenshot... Boston Backwards training run #42: 5 miles backwards @ 11:24 min/mile pace. My legs are so tired from my 16 mile backwards run on Sunday. I decided to take it easy today - I was planning on running 9 miles but cut it down to 5 at a slower pace. Gotta listen to my body!! BostonBackwards.com #backwardsguy #bostonbackwards #running #treadmill #tired #exhausted #pain #fitness #workingout #endurance #getfit #shapeup #marathon #marathontraining #bostonmarathon #worldrecord #EndEpilepsy #epilepsy #epilepsyawareness #epilepsywarrior #charity #fundraising #supportme
8 1
A: I wish they would know that we are people before our epilepsy. We are humans, and do not deserve to be spectacles. Please comment below, especially caregivers! • • • • #epi#epi#epilepsyeness #questions #cure #epilepsy #thoughts #epilepsy #awareness #humans #warriors #purple
5 1
Peyton went through a lot but was so strong. Her fight will carry on to help others. #peytonnicole #epilepsyawareness #nocure #iwearpurpleforpeyton #peytonslegacy #myhero
5 0
Only 2 weeks away!! Get your tickets (link in bio)! Can't wait to see you all there! 💜 #Repost @liv@livingforkimberly ・・・ JOIN US! Tickets are $25 and all proceeds will help to support @livingforkimberly and @epilepsynewengland! To purchase tickets, go to: lfk.eventbrite.com (link in bio). If you'd like to donate a raffle prize, please email Jaimee Chace (jaimee.chace@gmail.com) or Lauren Weigold (lauren.weigold@gmail.com). Complimentary ticket per donated raffle item. Let's #lightthewaytoday and celebrate Kimberly's beautiful life in her favorite way: with all of you dancing with her favorite band, @7dayweekendband 😀 Thank you, thank you, thank you for your continued support! 💜 #epilepsy #sudep #sudepawareness #LFK #epilepsyawareness
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"I had my first seizure at the age of 13 in Disneyland Paris. Nothing happened again until 17, at which point I was having tonic clonic seizures every day, without any warning, whilst trying to attend school to study my A-Levels. After several months of doctors brushing me off I was finally referred, diagnosed with Epilepsy and put on medication (that abrupt). Needless to say I did awful in my A-levels but got into university through clearing to still study the course I wanted to (yay!!). Half way through first year I then had a stroke that left me paralysed down the right side of my body but I very fortunately started to regain movement after a month. I have since represented Team GB in karate, graduated university with a first class honours degree and am currently studying for my masters degree. I still have seizures and I’m on three different medications but I’m just grateful for life itself. Grateful that I wake up every morning. Obsessively grateful, and thankful for everyone that weathered the storm. Take each day as it comes and live life to the fullest. Appreciate the little things in each day. ‘Have courage and be kind’. My aim for 2018 is to really push for and raise awareness of Epilepsy because I still to this day (just a couple of months ago) get told that 'epilepsy isn't that bad, you could have something worse'. It's upsetting how misunderstood the condition is. It's not just the seizures, it's the post-ictal phase and the medication side effects too that people don't seem to understand. I sometimes wish people could be a fly on my wall on a bad day just to see how debilitating it can be." Massive thank you to Michaela for her epilepsy story 💜 #epilepsy #epilepsyawareness #epilepsywarrior #epilepsysucks
47 2
Leaving the house for the first time in 4 days. Going for a short walk to collect bunny food, because it's sunny outdoors and after so much time avoiding light my brain is doing pretty good...11 #seizures on Sunday, 13 yesterday, a far cry from the 20-30 every day days I was having a week ago 😃 But I need time outdoors too, for my mh health...so my physical health will just have to deal with it. #butyoudontlooksick #notalldisabilitiesarevisible #disabled #disability #spoonie #disabilityawareness #sei#seizuressuck #undiagnosed #disabilitypride #tra#transer #trans #transguy #ftmtransgender #nonbinary #enby #lgbt #epilepsy #epilepsyawareness #seizuressuck
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Awesome tshirt from the phenomenal #epilepsyawareness gig Saturday. #whorenomoreband played a blinder. Very proud of them.
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#jinxproofgenetics 🏆🏆🏆☝️🤓🐝+ So cool jinxproofdankbank.com is now up and running 🏃 check it out and if you have time spread the word we hope you all have a awesome and day just wanted to say every morning starts a new page in your story make it a awesome one ☝️ much love and respect from my family to yours @_jinxproof @missroseiam @keylowclub Sirius happiness #dank #fiyah #frost #bombay #chronic #hightimes #notill #livingsoil #organic #epilepsyawareness 💜💜💜 #autismawareness 🐝🐝🐝+++ @adhesivefarms
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Our #Cincinnati team had a great time volunteering with the @epilepsyfoundationofgcc! They spent the day painting and sprucing up the women's group home facility in Williamsburg, Ohio. #OswaldCares #EFGCC
11 1
Meet Oliver! This little gentleman is ready to take on SCN8A! “Thanks to the SCN8A support group and The Cute Syndrome Foundation, the information gathered and shared has helped with proactive treatment options with the hope of seizure freedom. Although this past year hasn't been complete smooth sailing, we will keep moving forward and faster as Oliver has started to run!” - Maly Redfearn, Mom Thank you for sharing! 💜
17 1
Check out these awesome #hopeforepilepsy #temporarytattoos that will be available, EXCLUSIVELY, at the 13th Annual @5kforepilepsy -which is LESS THAN 1 MONTH AWAY! 😃💜 The time is NOW. Click then link in our bio or visit EPILEPSY5K.ORG today! ✅ #5k #5kforepilepsy #5kwalk #5krun #epilepsyawareness #endepilepsy #purplepride #epilepsyfoundation #epilepsywarrior #epilepsyfighter #walkforepilepsy #epilepsywalk #5kgiveaway #5kprep
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What is a standard EEG? - An electroencephalogram (EEG) is a test used to evaluate the electrical activity in the brain. (picture 1 and 2) And there are DIFFERENT TYPES! What? - I’ve only had the standard EEG (multiple of them) and a S-EGG (stereoelectroencephalography) for serious seizures, which is a minimally invasive surgical EEG that is used to further identify areas of the brain where epileptic seizures are occurring. They implant depth electrodes in the brain to “read” the seizures and detect the seizures patterns. (Picture 3) But wait - There are also GRID EEG’S, which they remove a piece of the scull and lay a range of electrodes called a subdural GRID, and it is a longer surgery. It is more of an invasive surgery, called a craniotomy. There are more, but the post is getting long... All of them cause pain in different degrees, irritation, anxiety and depression of any type, trauma before and after, and a list of other things Some education for today... I know I missed things so please comment below. • • • • #epi#epilepsyeness #epilepsy #EEG #hospital #anxiety #trauma #educateyourself #healthcare #cure #learnsomething
20 3
If you can be grateful on a Monday, then you can be grateful any day. What are you grateful for today? 🗓️🌅
13 5
Hey furends🐾 So you may know Brodi has been struggling with epilepsy that began early on his kittenhood, I recently started him on a strictly keto diet that consists of food that is high in fat and protein with no starch. Ketogenic diets have been recognized to be successful in effective treatment of seizures, increasing energy, regulating insulin levels and many more beneficial improvements. . . 💊Along with Brodis daily phenobarbital and Keppra medication the keto diet has overall helped him significantly🙌🏻 . . #russianblue #russianbluekitten #catsofinstagram #epi#epilepsyeness #epilepsy #seizures #ket#keto #keto #ketogenicdiet #catfood #catlover #kittens #kittensofinstagram #kittenplay
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Faith Atkins, Junior Designer and daughter of JAC’s owners, created an initiative called @DontFearThePurple as a way to raise awareness for #Epilepsy. This was done through amazing events, contests and fundraisers aimed to help out our local epilepsy chapter, @EpilepsyNL709. 4 years later, Faith and the team at JAC have continued to be successful in creating awareness and managing the Don’t Fear the Purple initiative! Our goal is to encourage and teach others about epilepsy and to dismantle the lack of knowledge about it! 💪🏽 Epilepsy is a condition that many people hide from the public and unfortunately it receives a relatively smaller level of media coverage. We want to change this! #yyt #dontfear #dontfearthepurple #epilepsyawareness #nlcharity #charity #purpleday #purpleday10 #epilepsyNL #epilepsyfacts
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I am overwhelmed... but in a way that I wouldn’t have had the strength to be before. It’s a powerful “overwhelmed” and I am grateful. #epi#epilepsyeness #epilepsy #purpleismycolor #purpleday #selfie #thankyou
13 3
📸 1/3. “I sat in the darkness of my bedroom and I knew that if my life ended right there, I was okay with that. I was tired of fighting, tired of living with epilepsy and just plain tired. At this point in my epilepsy journey I was too tired to go on. In the previous twenty-eight years I had been on nearly ten medications, had way too many hospital visits, more seizures than I could contemplate and so many EEG and MRI’s I lost count before I was a teenager. I had always required ten hours of sleep; learning was a challenge; I had constant headaches, and emotionally I felt like I was on a roller coaster...” Click the link in our profile to read more 👆👆 • • • #epi#epilepsyior #myepilepsyhero #epilepsyawareness #epilepsy #seizures #keto #ketogenicdiet #ketolifestyle
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📸2/3. Seizing My Life Back with Keto is one of our first Stories of Adventure. Click on the link on our profile to learn more 👆 • • • #myepilepsyadventure #epi#epilepsyior #epilepsyawareness #epilepsy #keto #ketogenicdiet #ketogeniclifestyle
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📸3/3 Click the link in our profile to read the beautifully honest story from @thetraininsideme 👆👆 • • • #epi#epilepsywarrior #ketogenicdiet #ketogenicliving #epilepsyawareness #adventurelife #seizuressuck #epilepsy
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Apollo is now officially retired as a service dog. He’ll go on now to work with a FEMA handler as a cadaver search dog. It was the hardest decision to make to rehome him after 4 years as a loving and successful service dog but after being attacked multiple times by another dog, he just can’t keep working in public. He will always have the biggest piece of my heart for getting me through the most difficult journey of my life as my illness took over. He has saved my life more times than I can count and I am forever grateful for his devoted service. To my first service dog and my forever best friend- thank you Apollo. DC has the job from here. . . . #bordercollie #seizurealertdog #epilepsyawareness #mobilityservicedog #ehlersdanlossyndrome #chronicpain #ser#servicedogning #servicedog #disabled #chronicillness #spoonie #bordercolliesofinstagram #dog #dogs #seizures #servicedogteam #servicedogsofig #servicedoglife #servicedogintraining #igwoofs #collie #workingdog #dailydoseofcute #fema #searchandrescue #cadaver #k9 #firstresponders
31 2
Some people do have frequent seizures, perhaps daily, while others are more controlled, only experiencing them once a year. Some people have excellent seizure management and haven’t had one for a decade or more. Medication for epilepsy offers good control to the large majority. There are some, however, who are not helped by treatment and have intractable epilepsy. Epilepsy affects everyone differently.
15 1
Going to the movies! Sound and lights are no longer a trigger. #phuckepilepsy #thekingstoncoverfoundation #epilepsyawareness
11 2
Good Morning Champs !! When the world says “Give Up” Hope Whispers, “Try it one more time.” #nevergiveup #neversettle #keepworking #epilepsyawareness #morningmotivation
1 1
Sometimes it's not about the workouts but also about the body maintenance. This morning was a long and we'll needed yoga and stretching session after hours and hours in the car yesterday. Feel so much better already. Going to be warm tomorrow so I'll actually be able to run outside. Woohoo. 🏊🚴🏃🏅💪
44 2
💜 Hi Everyone! Little update on Roman.. we have been pretty much seizure free during the day for the past couple of weeks! He has had a few small seizures, mostly when he is over tired, and he still has MC jerks every naptime and during sleep. But we are feeling good with this progress! We are still waiting on genetics results, as well as results from his overnight EEG. Enjoying our #sei#seizure days and taking it slow 💜💜💜 . . #epilepsy #epilepsie #epilepsyawareness #seizure #seizures #endepilepsy #family #hospital #disorder #brave #iloveyou #romanthewarrior #bebravebrain #epilepsysupport #epilepsystrong #epilepsywarrior #childhoodepilepsy #love #beautiful #happy #life #ketogenic #medication #ketogenicdiet #findacure #seizureawareness #medical #cureepilepsy #IAMABLE
25 2
Our seizure advice leaflet #epilepsyawareness
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What a momentous day! The mumma hasn’t laughed or cried so much! A first for Bella and for our family, something I would have never dreamed possible ~seeing Bella on a surfboard! At first there was two amazing surfers helping Bella but, it soon became apparent she needed more physical support so slowly, two became three, became four, became five and Bella was briefly being held into sitting position on the surfboard and then held in the surf amongst the waves next to the surfboard. It was in her own way and at her own pace but, this amazing girl did her own kind of adaptive surfing with the help from her absolutely amazing highly trained entourage of surfers. I am absolutely blown away by how fantastic it was today. Talking with these amazing people who give up these time to ensure our children are included and who go out of their way to make sure every single child, no matter what their developmental level or abilities, have the best possible experience specific to them. This has to be one of the best days in Bella’s life so far. #sur#surfershealingralia #surfershealing #autismawareness #autismawarenessaustralia #surfsup #bellathebrave #adaptivesurfing #surfingdownunder #oneperfectday #tearsofjoy #inspirational #medicallycomplexwarrior #developmentaldisabilities #bestdayever #epilepsyawareness #memoriestolastalifetime #anythingispossiblewithalittlehelp
26 2
Today is my LAST FULL DAY of having long hair before it all gets shaved off for charity tomorrow! The donation page is still open and I would be grateful for ANY donation (as little as £1 can make a huge difference!)💆🏻‍♀️💇🏻‍♀️🙏🏼💜 #Epilepsy #epilepsysupport #epilepsyawareness #seizure #longhair #shorthair #shavedhead #bald #wish #please #support #donate #charity #littleprincesstrust #cancer #love #loveyourself
12 1
Faces of Canine Epilepsy #epilepsyawareness
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Epilepsi kan snu hele livet ditt på hodet! Link i bio👆🏼💜 #epi#epilepsie #epilepsi #epileptiskeanfall #blo#blog> #epi#epilepsynorway #epilepsy #epilepsyseizures #blog #epilepsyawareness
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ART AUCTION// Here it is, all finished... well it's not signed, varnished or strung... but the painting is complete! This is my donation towards the annual Epilepsy Awareness Art Auction @epilepsyactionaustralia . . . #ultraviolet #artauction #epilepsyawareness #livecolorfully #thenativecteative #creativityfound #creativelifehappylife #wearerhemakers #createmore #colorventures #abmlifeissweet #makearteveryday #passioncolorjoy
55 5
Look what I found @dammberr !!! Old photos of us from corps school !!! Well mainly you! Haha ! The worse and good days of the barracks ! #che#chef #chef #chefsofinstagram #chefskitchen #epilepsyawareness #navyveteran⚓️🇺🇸⚓️🇺🇸 #veteran ##tattoedmom #tattedup #chefknives #pitbullsofinstagram ##chefmommy #tattoomommy
17 1
LISTEN TO COMPLICATED ON DESERTSTORMRADIO.COM http://dsradio.ning.com/profiles/blogs/row-complicated #COMPLICATED #EPILEPSYAWARENESS #ALLFACTZ #TRUESTORY #ROW #REALLIFE #SUPPORT #BEWOKEN #WORLDWIDE #DESERTSTORMRADIO #DJCLUE #INDIE #MUSICWITHAMESSAGE #FORHIM #FORTHECAUSENOTBECAUSE #NOMOREPAIN
6 0
Driving, wish I had the ability to be on my own schedule and take a solo road trip #lifewithseizures #seizures #epilepsyadvocate #seizureadvocate #seizureawareness #epilepsyawareness #healthehealer💜
4 6
Biz fizyoterapiye geldik☺️ terspistimiz @damlaalp ile denge çalışıyoruz.Derin’nin daha dengeli ve düzgün yürümesi için dengesinin biraz daha iyi olmasıgerekiyor.yürüme çalışmalarımızda devam ediyor ama daha çok denge çalışıyoruz.#derinim #minikmucizem #meleğim #myangel #herşeyçokgüzelolacak #mucizeler #gerçek #yeterki #inan #hidrosefali #hydrocephalus #serebralpalsi #cerebralpalsy #cerebralpalsyawareness #epilepsi #epilepsy #epilepsyawareness #pesetmekyok #durmakyok #çalışmaya #devam #fizyoterapi #instegram
66 2
I debated on whether or not to post this (I would never want to come across as disrespectful).....but ultimately decided to because I believe in celebrating human life and all the cultures that make the tapestry of this earth so undeniably awesome. This vigil was out on the side of the winding road as we began our descent towards Phoenix. It’s neat to see how other cultures remember their loved ones who have passed. #sillandbillrun #twloha #suicideawareness #addictionawareness #epilepsyawareness #myepilepsyadventure #strongerthan
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Japan and USA Bogo! OMG! my total favourites! Peace oil is really powerful. All you need is 1 drop in the diffuser to scent your whole home. Great at night before bed to bring peace and calm in your evening wind down routine. Balance... this is my daily perfume and if you suffer from anxiety... this blend really really helps. Plus these oils seem to be ok with my child who suffers from epilepsy. Supports sleep and calm. Contact me today to access this offer. ONLY TODAY! #bogo #japan #usa #doterra #anxiety #stressrelief #perfume #natural #peace #familyhealth #holistic #holisticfamily #mumof2 #epilepsysupport #epilepsyawareness
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Do any of your kids have Epilepsy or do you know of someone who does? How does your family deal with it on a daily basis? #epilepsyawareness #epilepsywarrior #epilepsysucks #epilepsyfamily💜 #shesamazing
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Yes! Anyone else feel this way? #adr#adr#adrenalinsufficiencyawareness/a> #adrenalinsufficiency #adrenalinsufficiencyawareness #adrenalfatigue #addisonsdisease #asthma #foodallergies #epi#epilepsyeness #epilepsy #autism
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Sometimes our journey seems long, and hard, but along the way there are tons of moments that make it all worth it. Enjoy them, cherish them, and never take a single one for granted! #kidswithhealthproblems #foodallergies #foodallergiessuck #autisum #asthmasucks #epi#epilepsyawareness #epilepsy
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