Thread by @kurteichenwald

1. With the death of Cameron Boyce, epilepsy patients and their families are finally hearing what their neurologists refuse to tell them: Epilepsy kills. And there is something you can do about it... everydayhealth.com/columns/out-of…

2....studies show about 20% of doctors tell epilepsy patients and their families about SUDEP (sudden unexpected death in epilepsy) and most of those only because they are asked. Imagine having a disease that could kill you but your doctor won’t tell you. That is what we face...

3....the reasons they don’t tell fall into lots of categories, mostly “I don’t want to scare them” These are our lives. We get to decide. And there are things that might help. If you see someone who has had a seizure and stopped breathing, shake them, slap them, anything to...

4...the brain. I am what is called a near-SUDEP. I experienced the condition but before I died someone slapped the hell out of me. There is other stuff that might work. So, if you have #epilepsy, force your doctor to tell you about SUDEP & other potential fatalities.....

5...don’t let them tell you “I didn’t think you needed to worry about it.” I have met plenty of family members over the past year who were told that by their doctors - after the person with epilepsy had died.

Knowledge is strength.

...if you want to learn more about SUDEP go here: SUDEP.org

And if you want to read about doctors refusing to tell us and the consequences, read my article on this. everydayhealth.com/columns/out-of…