Please make Erin’s Wish come true. Educate yourself and your friends and family on the risks associated with epilepsy, especially when diagnosed at a young age. It could make all the difference.
Every parent of a child who dies a sudden unexplained death in epilepsy says,
“I wish I had known about the high risk list, we could have made more changes to our lifestyle.”
Erin was diagnosed with epilepsy at the age of 13 after a sudden seizure at home. Erin and her family adapted to her condition and made the necessary changes to her lifestyle and a plan was put in place at school then college for the management of the risk, she had good clinical support with a neurology consultant and an epilepsy nurse. Then at age 19 Erin suddenly died. Such a tragedy that a beautiful young life is lost and with no visible reason, epilepsy is an invisible illness, never showing up on scans or xrays, very occasionally showing up as brain activity on eegs which can indicate to a clinician where in the brain this seizure is taking place aiding them to prescribe the correct medication. But there’s a lot more that gps and clinicians could do to help their patients and their families as the children grow older.
There are 21 deaths every week in the UK that are epilepsy related (around half of those deaths are due to Sudden Unexpected Death in Epilepsy – SUDEP).
Research has shown that up to 42% of epilepsy deaths are potentially avoidable, with better risk knowledge and access to services, so it is vital people with the condition know how to reduce their risks!
To help with this, SUDEP Action have created free resources and safety tools that help with communicating and monitoring risks – like EpSMon(digital self-monitoring app for patients) and aSUDEP and Seizure Safety Checklist (for clinicians).
EpSMon is free to access, use and download, it’s the patient version of the Checklist.
The Checklist is just for clinicians and those who treat epilepsy patients. Any health professional can access a copy of that by registering, using the same link as above.
If people want to learn more about epilepsy, risks, and ways they can keep improving safety, more information and downloadable resources can be found here – https://sudep.org/epilepsy-and-risk
So, please help make Erin’s Wish come true. Educate yourself and your friends and family about the risks associated with epilepsy especially when diagnosed at a young age . It could make all the difference.