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1. The family of Cameron Boyce, at a time of great pain, stepped forward to confirm that he died of epilepsy. This hopefully will get the message through: Epilepsy kills many, many people through what is called SUDEP. And neurologists normally don't tell us it could happen....
2...that's right. Doctors take it upon themselves to prevent patients and families from worrying by keeping the potential for their deaths a secret - a death that might be averted if only they knew it was possible and what to do. I've written about this....
3...arrogance by our neurologists, who take it upon themselves to decide what we should and should not know. And their silence - born of hubris or of an unwillingness to have a difficult situation - helps keep the world unaware of the magnitude of what having epilepsy means...
4....a seizure isn't "funny." Causing one or potentially causing one (Looking at you, @netflix, and will be discussing this later today) can be fatal. The death of Cameron Boyce is a horrible tragedy. But it is my hope that his parents' disclosure will lead patients and family...
@netflix 5...who have never been told they could die - and that the death might be preventable - to go to their doctors, and rage "Why didn't you tell us?"....
@netflix 6...imagine having a disease that could kill you, and your doctor decided independently not to tell you. That is what we are fighting. I am told that some neurologists are mad at me for fighting this publicly. To which I say - to hell with you. It's OUR lives, not yours....
@netflix 7...did Cameron or his family know? If they were part of the majority of patients - as proven by academic research - they were not told. If they were in the majority, they were not told what to do that might help save. If they were in the minority, they had a good doctor....
@netflix 8...I have written about this, and I will not stop screaming about SUDEP - Sudden Unexpected Death in Epilepsy - until doctors stop hiding it. Here is my article of rage - and once again, I thank the family of Cameron Boyce for their public statement. everydayhealth.com/columns/out-of…
