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Chris Gautier, Volunteer Mentor avatar

What could doctors do better for people with epilepsy?

Epilepsy & Seizures | Last Active: Apr 2 7:15am | Replies (71)
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Profile picture for Chris Gautier, Volunteer Mentor @santosha

@jakedduck1
Hi Jake,
I agree with you—SUDEP and Status Epilepticus are conditions doctors should discuss more openly with patients. I've learned about both conditions through my own research during my first year of treatment.
There are ways to present this information without causing undue anxiety. Withholding information doesn't protect anyone—it just avoids difficult conversations that doctors should be having.
I'm curious to know what other members' experiences have been in this respect. Were you informed about these conditions by your doctors, or did you discover them on your own?
Chris

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Replies to "@jakedduck1 Hi Jake, I agree with you—SUDEP and Status Epilepticus are conditions doctors should discuss more..."
Jake | @jakedduck1 | Jan 16 9:40pm

@santosha
I believe the first time I was told about Status Epilepticus was by my parents after I came home from an 8 month long induced coma to control the condition.
The first time I heard about S.U.D.E.P. was on epilepsy society, a British epilepsy forum when someone died of the condition.
Take care,
Jake

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