I lost my dad, Harold Ginn, from #SUDEP (Sudden Expected Death in Epilepsy) 13 years ago today.

Prayer and loved ones have helped me heal but the pain still stings.

I look forward to meeting him (and mom and others) again in Heaven one day!

Here’s the story that I wrote…

'I only have seizures when I sleep.'
Nocturnal #seizures can be dangerous too! They increase risk of injury & SUDEP (Sudden Unexpected Death in #Epilepsy ). Do you have a tendency to ignore your nocturnal seizures? #Epilepsy Awareness

Online Epilepsy Memorial Day is on 1st May 🌸

If you have been #bereaved by #epilepsy / #SUDEP , you are welcome to leave a message on our dedication wall over the coming weeks to remember those who are forever remembered & forever missed 💜

SUDEP took Nikey aged 23. Far too young. She lived her life to the fullest she could, despite having up to 300 seizures per month.

Now, in memory of their daughter, Nikey's parents sponsor a puppy in training. What a beautiful thing they are doing. 💜

#NationalPetDay

SUDEP Action has joined forces with other charities & community pharmacists to issue a stark warning to the Government – fix the medicines supply chain or the continuing drug shortages crisis will put more patients’ health at risk.

sudep.org/article/charit…

#SUDEP #epilepsy

Join us tomorrow Apr 11 for #EpiEx 's bi-monthly #epilepsy research meeting at Texas Medical Center, Topics on #SUDEP , #neuromodulation , & #channelopathies . Network with top Houston institutions! Details & sign-up on our website. uth.edu/tirn/epiex.htm #HoustonEpilepsy

So much about our Health system is wrong #epilepsy #sudep
tiktok.com/t/ZTLUqGP6s/

Rose Fest is returning on 27 April to celebrate what would have been Rosie Carter-Desai’s 30th birthday.

Rosie died of SUDEP on 8 September 2013, just 19-years-old.

Read more: sudep.org/article/rose-f…

If you would like to donate: tinyurl.com/37ec224j

#SUDEP #epilepsy

SUDEP 😢 “ sudden unexpected death in epilepsy” . FDA doesn’t care about any of us it’s about profits . This video made me cry 😭 I am lucky because a year ago a drug on market almost killed me 1% of population get perforated bowel . 1% of his many people is my question 🙋‍♀️
FDA,…

lisaMarie ashley nguyen Brain Ablaze Why do you laugh? My son died last May from sudep, it’s no laughing matter, please take care of yourself

Happy birthday to #worldchampion #hurdler #DaiGreene ! He has an inspirational story for all people living with #epilepsy ! #epilepsy warrior #EpilepsyAwarenessMonth #Epilepsyawareness #epilepsy strength #sudep #sudep awareness #epileptic #epilepsia #seizures #seizures suck

Just saw a girl on tik tok talking about how her sister died from SUDEP/a seizure because the manufacturer of her meds changed and she didn’t react the same to it so her seizures came back full force. I wanna throw up

Learn how Neureka Sleep can help your family: neureka.ai #epilepsy #seizures #nocturnalseizures #caregiver #epilepsy caregiver #sleepmonitor #sleepdata #AI #SUDEP

Too many people underestimate or ignore epilepsy risks & fail to recognise that medicines are the 1st line of defence against preventable epilepsy deaths inc SUDEP.
We need urgent action to resolve medicine shortages & issues of accessing epilepsy care, so people can live safely

Ahead of Online Epilepsy Memorial Day on Wednesday 1st May 2024, you can add a dedication to our Memorial Day Dedication Wall.

Forever remembered, forever missed. 🌸

sudepaction.memorypage.org/foreverremembe…

Our support team are here at [email protected]

#epilepsy #SUDEP #cherryblossom

Are you a #caregiver for a child, teenager or adult with #epilepsy and #nocturnalseizures ? What if both of you could get better #sleep & feel safer every time you fall asleep? Learn more: neureka.ai #seizures #SUDEP #AI #sleep monitor #sleep data #epilepsy caregiver

Jan Ellison Baszucki Ernest Lancaster Hannah Warren That’s my cousin, Sonia. She had pharmacoresistant epilepsy and died from SUDEP at the age of 33. Doctors offered her medications and surgery but nobody ever mentioned ketogenic diet.

ashley nguyen lisaMarie Brain Ablaze I know, but please take sudep seriously, I don’t want any other parents going through what I am 😞💔

Key point: #Fluoxetine , #fenfluramine , or a 5-HT3 agonist (SR 57227) significantly suppresses spontaneous seizure-induced mortality in Dravet mice.
doi.org/10.1111/epi.17…

#epilepsy #ILAE #Dravetmice #spontaneousseizures #SR57227 #SUDEP ILAE @epilepsiajourn Wiley Neuro

Brain Ablaze They scared me more than my daytime ones, but I don't have them at the moment, haven't for a while. Less injuries from falls, except falling out of bed, but more risks of #SUDEP
Plus, sleep #seizures caused such disruption to my sleep, so in turn, it affected my daytime ones.💜