currently seizing the day. epilepsy & RNS advocate 💜 she/her • views my own. same handle on BlueSky
San Francisco, CA
Joined March 2016
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this will be an ongoing thread!! i will post more below. please give credit if shared 💜 all are free to use
here’s some more cute screensavers for seizure first aid 💜💜 all info is from @EpilepsyFdn #epilepsy #EpilepsyAwareness
even if you don’t have #epilepsy, please give the gofundme a read or donate if possible!! 💜
Epilepsy Warriors and single fathers may understand my story.
Please just give it a read and maybe a comment or share.
Please share, support, or donate—every small action counts. gofund.me/c09f3079f
@kaileyh175 @youngepilepsy @CureEpilepsy @epilepsyposi @itsmejimmydarts
i’m sure you’ve heard the term/phrase “brain rot” on social media. to decrease my screen time, i started blowing bubbles for the kids in my neighborhood! for many who find themselves online (a bit too much) it is healthy to find an offline hobby and pop in here occasionally 💜
just made an #epilepsy themed coloring book!!! ahhhh can’t wait for November 💜
that girl with epilepsy retweeted
Even if you don't think you do, we bet you already know a person living with #epilepsy. We make up about 1% of the population! So if you've met more than 100 people in your lifetime, you are statistically likely to have already crossed paths with one of us. #EpilepsyAwareness
i do a regular 20-30 minute walk each day! around the neighborhood if i feel like talking, but after my surgery, definitely backyard (only to be safe).
walks, no matter the length, are always good for easy exercise 💜
Regular #exercise can be a powerful tool for overall brain health, #stress reduction, #sleep quality, and even managing #epilepsy. Did watching the 2026 FIFA World Cup ⚽ motivate you to level up your own fitness goals? #EpilepsyAwareness
that girl with epilepsy retweeted
We've seen reports that the new Odyssey film has a scene that might affect photosensitive viewers. -- Can anyone confirm this? 3-5% of people with Epilepsy are photosensitive. #EpilepsyAwareness
that girl with epilepsy retweeted
kind little reminder that his family is trying to keep his legacy alive with the cameron boyce foundation whilst also trying to raise more awareness about SUDEP. (sudden unexplained death in epilepsy). and is something that should also be shared!!!!
got my sutures and a random staple (??) out yesterday!!! yay! also, if you don’t want your hair shaved, you can ask them to braid it if it’s long enough 💜
#epilepsyawareness
woo! RNS battery is finally replaced! since it was supposed to last years longer, it will be investigated by @NeuroPace. and as always, huge thanks to @NeurosurgUCSF @UCSF!! 💜🫶🏻
that girl with epilepsy retweeted
As a parent of a son with #epilepsy my heart breaks when he seizes in the bathroom, blocks the inward-swinging door, and lies unconscious, making it impossible to move. This has happened a couple of times. I learned my lesson.
Bathroom doors should swing outward for safety. It’s just one of those accommodations that nobody tells you about.
Any other suggestions or good tips out there?
for anyone wondering, i do run a Discord server for #epilepsy! fun channels as well as talking about your seizures or even venting. caregivers are welcome too!
link only available through DMs 🫶🏻💜
fun fact about me: rewind 2020, my friend parked in Eureka Valley/Kite Hill and it was maybe 3-4 blocks from Twin Peaks. found a hiking trail and hiked the entire empty street- beautiful view. my Apple Watch would be proud!!
