Kailey
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kaileyh175.bsky.social
Kailey
@kaileyh175.bsky.social
Epilepsy and RNS advocate! 💜
Pinned
planning on writing a blog post about here vs the other place-
what main differences do you see or miss? #Epilepsy
here’s a sneak peek of my purple Christmas tree!! 💜 i noticed that since last year, one house in my neighborhood did red for AIDS 🫶🏻
December 27, 2024 at 12:23 AM
can we all collectively agree not to compare #epilepsy to other medical conditions when advocating or spreading awareness? each experience with a medical condition is different 💜
December 15, 2024 at 1:23 AM
i once got accused of being on drugs (by another person with #epilepsy) because my pupils were dilated 🤦🏻‍♀️ i had just started another medication and got maybe 5-6 hours of sleep
December 11, 2024 at 1:17 AM
if you shop on Poshmark and watch the lives, please be careful!! they are coming out with unnecessary graphics that strobe and move fast. shop carefully 💜
December 1, 2024 at 8:06 PM
Reposted by Kailey
I read the original book, it's an excellent story, if you can't watch the movie you can enjoy the book
November 27, 2024 at 7:24 AM
if you’re an iPhone user and have auras before a #seizure, ask Siri to time it if you are alone! 💜💜
November 28, 2024 at 12:59 AM
if you have photosensitive #epilepsy, it may not be best to watch the movie Wicked as there were some flashing lights in the musical/movie 💜
November 27, 2024 at 12:49 AM
this can be understandable in some cases but having #epilepsy itself can be traumatizing for anyone, especially parents and entire families.
keep in mind, not everyone with epilepsy has siblings 💜
It's Epilepsy Awareness Month, and there is no better time to remind you that this journey can severely impact siblings of children with epilepsy. Watch here: ow.ly/PHp850U2yo6

#epilepsy #epilepsyawareness #NEAM2024 #EpilepsyAwarenessMonth #PESAlliance #NeuroSky
#PatientAdvocacy
November 24, 2024 at 7:08 PM
if you haven’t yet, please join the #epilepsy feed! my boyfriend and i created it for #epilepsyawareness month for the community on here 💜🫶🏻
November 23, 2024 at 10:11 PM
yay!! for those wondering where @brainablaze.bsky.social has been in the #Epilepsy feed, we just added them!!! all of their posts will automatically show up 💜
November 23, 2024 at 9:58 PM
the #epilepsy feed is officially up!!! yay!! my wonderful boyfriend @dkhmora.bsky.social helped create it!
have fun raising #epilepsyawareness with me!! 💜
November 22, 2024 at 6:00 AM
taking your medication(s) for #epilepsy on time is crucial to prevent a seizure and SUDEP!
have you ever missed your meds or forgot? 💜
November 22, 2024 at 12:11 AM
Reposted by Kailey
Disabled people are worth protecting. Period.
November 21, 2024 at 12:07 AM
planning on writing a blog post about here vs the other place-
what main differences do you see or miss? #Epilepsy
November 20, 2024 at 1:25 AM
Reposted by Kailey
I’m sure everyone around my age remembers Flo Jo and her fingernails. Did you know she sadly died after having an epileptic seizure? #Epilepsy kills #EpilepsyAwareness Goodnight take it easy #YNWA
November 19, 2024 at 11:52 PM
DYKT seizures can happen to anyone? it is estimated that 1 in 10 people can have a seizure during their lifetime! 💜
November 19, 2024 at 11:02 PM
having a Canva pro subscription is not anything to be ashamed or embarrassed about. i just make small graphics to raise #epilepsy awareness time to time 💜🤷🏻‍♀️
how are you DL with a canva pro subscription?
November 19, 2024 at 10:31 PM
a HUGE thank you to @defiantandbeyond.bsky.social!! when i first downloaded this app, they were the first person to show up and i immediately recognized them! 💜💜
November 19, 2024 at 10:25 PM
Reposted by Kailey
November is Epilepsy Awareness month in the United States, in Canada the Awareness month is March . You can continue to advocate 365 days a year , for those living with seizures & their families .

www.neuropace.com/blog/novembe...
www.neuropace.com
November 18, 2024 at 4:01 PM
new here!! i have #epilepsy and blog about it as well to bring awareness to the #disability 💜
this month is epilepsy awareness month and i would be great to meet others with the same disability 🥰
November 18, 2024 at 2:20 AM
epilepsy friends!!!!! i have an idea- what if we made an #epilepsy feed?! 💜
November 18, 2024 at 12:48 AM
Reposted by Kailey
Gonna try something to help you build! Reply below w a few words about yourself. Pin and repost this. In a few min return and follow at least ten people you like. Those who are followed, please FB! Find your family! You don't need to be following me to participate. The more reposts the better!
November 17, 2024 at 9:21 PM
while public #seizures are scary, i made these for #epilepsyawareness month!! Christmas themed screensavers that teach basic seizure first aid 💜 991 AND 999 are included!
November 17, 2024 at 10:14 PM
finally made the big change from X to this platform!! known as “that girl with epilepsy” on X!
very excited to spread #epilepsy awareness on here 💜🫶🏻
November 17, 2024 at 9:18 PM