Why you need to know about SUDEP

 Sudden Unexpected Death In Epilepsy

SUDEP Awareness Day , also known as SUDEP Action Day is Oct.20th , but you should ask your health care provider about it & discuss it every day .

https://www.youtube.com/watch?v=0fHbNyjHWFU&list=PLNfGI8FUCWhPq7svRVCQp_G962Dp4ByPe by talkaboutit.org

https://www.youtube.com/watch?v=eBkTWrwHue8 by SUDEP Aware

Watch the videos , start the conversation , let's talk about it .

The more you educate yourself the more you will know.

Follow the Hashtag or use the hashtag on social media #iamSUDEPaware .

There are many Epilepsy awareness podcasts on Spotify ,Soundcloud etc.

Here are some links below for you or someone you know who may need support or if you want to learn more about SUDEP .

https://www.sudep.news/

https://sudep.org/

https://knowsudepnow.org/

https://www.cameronboycefoundation.org

If you're having any trouble viewing the links ,please copy & paste them to your internet browser .

When my daughter was diagnosed age 8 we had never heard about Epilepsy & it wasn't until her teens , i happened to see a tweet by SUDEPaware , i Twitter DM'd them , they were kind enough to send me info . My daughter's next neurologist appointment i took the info with me & before we left i started asking questions like :
• Can you please explain SUDEP
• Is my daughter at risk
• What needs to be in place
The neurologist explained SUDEP to us but i always thought it was strange that no one out of 5 neurologists my daughter had never brought it up until , i asked .
When i asked if my daughter was at risk , her neurologist said not high risk but if she was to constantly miss a med dose or not follow plan in place for her , the risk could become higher , also if her seizures changed to the high risk kind .
When i asked about a baby monitor for her room so i could hear what's going on at night , they said you can if you want but not necessary ( we live in a 3 level townhouse, so them saying not necessary didn't make me feel much at ease ) . i asked about a seizure monitoring device ( watch, app ) , we were told not needed at this time . My concern was my daughter has no warnings before a seizure , the neurologist said the devices would not help. i left the meeting confused , thinking isn't that what the seizure monitoring device is for ?
That question still to this day has never been answered , i mean , im trying to make life a little easier 🤷‍♀️ .
My thoughts on this , ask questions, no question is ever dumb when it comes to you or your loved ones health . Write your questions down before you go to appointment.
Remember, as much as your health care provider would love to spend time with you, you are not their only patient . Get the medical expertise answers from them & then come to the Epilepsy community for more answers , if one person can't answer your questions, someone else will . There are 65 million plus people worldwide with Epilepsy, this community is HUGE ! Just search up the Epilepsy , SUDEP or Seizure #hashtag on social media . You are not alone , if you feel like you are , you won't be for long . 💜

Is SUDEP always in the back of my mind & am i glad i found out about it ?
Yes , i would rather know than not . I think SUDEP should be discussed between health care professional & patient /patient family as soon as first diagnosis. Prevention. Education. Support .

Blog image credit : SudepAware

signed Lorrie