[News] oh my, hello controversy... new definition of epilepsy is now official by ILAE

[qtowngirl]

i shook my head at more of this than not, mostly the 'if it's been 10 years...' part. i'm sticking w/incurable, mostly b/c i've learned of too many people that thought they were free, even as long as 25 years, and szs reared their ugly head.
onder: at least they admit tho "The revised definition is not perfect."


http://epilepsy.com/article/2014/4/...ail&utm_term=0_cf0feb6500-17cd899baa-12067713

 

[JaneC]

We've had a discussion about this on Epilepsy Scotland's Facebook page. The thing that is really p*ssing people off is that it classifies E as a "disease" rather than a condition.

 

[qtowngirl]

oh wow, really? how different countries are! in canada it's a disease, i tried saying disorder the first time i met my epi and she corrected me. i asked why and she asked me, 'how is it not a disease?' i shut up.

lol now after a few years of research it pisses me off, as you say, when i hear it called disorder (my epi is part of a team that saved my life so i do respect everything she says )

also, you say you guys have been talking about this in scotland? when did you find out? our n.american article was just out on tuesday and i received it from them yesterday (Epilepsy Foundation). you too or have you known for a bit?

 

[JaneC]

No, it's just been in the last couple of days qtowngirl. The thing that bothers a lot of people is that they mistakenly think a disease refers purely to something that can be caught. That isn't the case but if people who have E think that, people who don't have E are going to think it as well.

The other thing which has caused concern is the bit about putting people on AEDs after one seizure on the basis of probability that they'll have another. I suspect this may have increased the chances of my daughter being put on meds immediately after her diagnosis. Instead, we able to "buy" her three years before we felt it necessary to resort to them.

 

[chmmr]

If you google a definition of disease, it says :1.
a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury."

I guess with the physical injury part i could understand why people could technically say their E is not a disease but for my daughter i consider it a disease (just like asthma, or diabetes or cancer). (i also live in Canada

 

[qtowngirl]

re: jane.... :agree:

-the actual meaning of 'disease' is not well-known or well-taught.
-another sub-issue is that 'disorder' is the definition for mental illness; this is a huge part of why for years, and still in many places, epilepsy was/is looked at as a mental issue. i fully agree why globally it should be made clear it's a disease. many, many with e have been told they're 'f---ed in the head.' *grrrrr*

i also greatly agree with 'the probability' of another seizure, that's not justifiable. many were comfortable with the 'as of 2'... i think this is just going to cause more confusion and that's the last thing society needs as a view on epilepsy.

 

[qtowngirl]

If you google a definition of disease, it says :1.
a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury."

I guess with the physical injury part i could understand why people could technically say their E is not a disease but for my daughter i consider it a disease (just like asthma, or diabetes or cancer). (i also live in Canada

exactly.

it is the same as cancer; they're both issues with our body's cells. simple to understand i'd think, and most half-intelligent people would get it, IF society was informed properly.

btw can i ask, where in canada do you live? just saying province is ok if you want, or pm me

 

[JaneC]

The UK's National Health Service defines E as a condition (maybe that is going to have to change) and that is what people seem comfortable with. I didn't know that about the word disorder, qtowngirl. You're right - anything that looks like a step back instead of forwards isn't good.

 

[qtowngirl]

my firm belief (as with many, i've learned from some with e as well as my surgical team) is that a strict divide has to be put in place between a mental illness and epilepsy. they are vastly different, and what's worse is that they can be (and are, from me first-hand) misdiagnosed for each other aLOT.
if it's true epilepsy, there is nothing 'mental' about it. and yes tho mental stressors can be triggers, it's not the cause. i have great reliance that globally it's trying to be taken out of the dark ages; we are not possessed, we are fighting a common disease, THAT SIMPLE.

let's set our clocks members and see how many years (aka centuries) it takes before that is an actual united change. somewhere around 2080?

 

[Jack's Mom]

My mother had her first seizure in 1974. She then took Dilantin for 5 years without another seizure. From 1979 until 1992 she was not medicated and seizure free. Then she had her second seizure. She was put on Tegretol and had two or three break through seizures over the next few months. They switched her to Dilantin and she was seizure free for 5 years so they discontinued it. She has now been medication free and seizure free since 1998. By this definition she would have been considered resolved in 1984 and again in 2008. I don't guess she has to call herself an epileptic, but I'd still put her at risk of seizures.

 

[WhitneyLB]

Yeahhh, sooo all I can think of to say is this ticks me off. Smh.