Epilepsy Blog Relay: Danny Did Foundation on SUDEP
The Danny Did Foundation (DDF) has worked tirelessly since 2010 toward its mission to increase awareness of Sudden Unexpected Death in Epilepsy (SUDEP).
The Danny Did Foundation (DDF) has worked tirelessly since 2010 toward its mission to increase awareness of Sudden Unexpected Death in Epilepsy (SUDEP).
Roman was diagnosed with epilepsy as a result of cortical dysplasia at the age of 3.5 months old. Learn more about cortical dysplasia here.
Before I started treatment for Cancer, I knew my “5-yr survival rate” was 39%. Yet it’s taken ~40 years to est. 29% of deaths in epilepsy could be from SUDEP.
DYK? SUDEP is the most common disease-related cause of death in people with epilepsy. By having early conversations and educating patients and families on #SUDEP, we can work with them on the modifiable risk factors (AEDs adherence and adverse events). Read more on the connection between patient education and seizure freedom.
Leila attended her first PAME conference and found it was a meaningful way to connect with others in the epilepsy community to discuss SUDEP.
Purple Day 2017 is quickly approaching! Join Emily and get and share ideas to celebrate and support one another on March 26, 2017!
For a grieving parent who has lost a child, the thoughts of an upcoming graduation day (and the day itself) – there are no words to express the pain.
The phrase “The weather is nice outside today” was my salvation when I needed to pretend that all was fine in the world.