It's not a disease...
angry doc learnt something new today - apparently, epilepsy is not a disease.
Epilepsy talks soon for professionals and the public
Letter from GRACE TAN Chairman, Singapore Epilepsy Foundation
We refer to the letter, "Boy with fits just left to rest" (Aug 14) by Mdm Yue Lai Theng.
The Singapore Epilepsy Foundation (SEF) agrees with Mdm Yue's concern about the importance of promoting public awareness of epilepsy (commonly known as fits or seizures).
Epilepsy is not a disease, and it is not contagious. It is a common neurological disorder that causes sudden, uncontrollable electrical surges in the brain. These brief interruptions in brain activities cause periods of altered awareness, known as seizures, whose nature and intensity vary from person to person of any age.
One of the SEF's objectives is to promote greater awareness and information on epilepsy and its management to the general public especially to teachers at pre-schools (including childcare centres), mainstream and special schools.
The basic understanding of first aid for epilepsy will help provide comfort to the individual who has a seizure and will ensure minimal harm during and after the occurrence of the seizure.
In the coming months, the SEF, in collaboration with the medical teams of public hospitals and professionals in neurology, will be organising a series of talks on epilepsy awareness and management for healthcare professionals, teachers, caregivers and the public. Please visit our website at www.epilepsy.com.sg for details to be announced or email your enquiries to info@epilepsy.com.sg.
angry doc was wondering why all his patients with epilepsy were coming to see him and taking medication if they weren't suffering from a disease.
Turns out they have a *disorder* and not a *disease*.
The SEF is not the only organisation to state that 'epilepsy is not a disease'; google the phrase and you will find literally hundreds of sites proclaiming the same.
Epilepsy may not be a single disease entity with one single causation or pathology, and you can even argue that the term epilepsy is properly a sign and not a diagnosis; so why do angry doc and his colleagues continue to use the term epilepsy?
Well, a lot of it is probably 'historical', but a lot of it is because the term is convenient and useful in daily practice - whether you call it a disease or a disorder, patients with epilepsy first require a work-up, then monitoring, and in many cases treatment.
angry doc is all for promoting awareness of the condition and its management, but he doesn't really see the point in making the point that epilepsy is not a disease.
Maybe he just needs to attend one of these awareness talks...
Labels: letters
posted by angry doc at
8:00 pm
14 Comments:
haha we should just call everything 'deviations' rather than worrying about the disease/disorder/condition kinda confusion!
actually 'disease' is just an unfashionable term la, even they would rather call STDs STIs these days.
there might be asymptomatic STIs that you cant really call 'diseases', but who is to deny us calling neurosyphilis a non-disease?
By
KC, At
August 20, 2007 10:20 pm
angry doc is all for promoting awareness of the condition and its management, but he doesn't really see the point in making the point that epilepsy is not a disease.
Perhaps it has to do with the negative connotation of the word?
That disease is an affliction caused by outside agents like a virus or bacterium and is usually contagious.
Disorder is caused intrinsically and not contagious.
For instance, BSE should be termed a disease and Alzheimers a disorder.
This way, the public need not be alarmed to be in close proximity with epileptic patients in seizure.
PZ
By
Anonymous, At
August 21, 2007 12:18 pm
Do laymen make that distinction?
Certainly doctors don't.
By
angry doc, At
August 21, 2007 5:01 pm
angry doc said...
Do laymen make that distinction?
Well I certainly don't but that seems to be the gist and implication of the letter by GRACE TAN Chairman, Singapore Epilepsy Foundation.
"Epilepsy is not a disease, and it is not contagious. It is a common neurological disorder....
In other words, unlike a contagious disease, it's merely a brain disorder and hence not contagious.
PZ
By
Anonymous, At
August 21, 2007 5:53 pm
Maybe just to add my thoughts to this.
From my experience talking to patients in Singapore and after finishing my course in TCM/acupuncture, I realise that some of these "misconceived distinctions" between disorder and disease may be inherently cultural in nature.
TCM does make the distinction between an internal problem versus invasion of external pathogens.
For example stroke can be caused by invasion of wind into meridians and collaterals.
In Epilepsy they would differentiate the syndrome into excess types and deficiency types. In excess types it might be due to invasion of wind (possibly read as disease?) whereas in deficiency type would be due to deficiency of Qi and blood, phlegm and damp stasis.(read as disorder?)
So sometimes when patients ask funny questions it might actually be due to the inherent links between Chinese culture, TCM and Feng Shui etc etc....
So maybe making the distinction does make a difference to many lay people.
By
Dr Oz bloke, At
August 21, 2007 8:44 pm
Like I said the phrase "epilepsy is not a disease" is not unique to the SEF, so it can't be a local-only cultural thing.
In fact, my patients don't refer to epilepsy as a disease or a disorder - they just call it epilepsy.
Perhaps it is a cultural thing where that phrase originated, and other epilepsy societies just parroted it?
Maybe I *should* attend one of those talks and ask them...
By
angry doc, At
August 21, 2007 9:19 pm
Well, it seems the (US) Epilepsy Foundation has this to say on their "For the Media" page...
"Many people with epilepsy prefer the term "disorder," since the condition is not a "disease" in the usual sense of the term. ... To the general public, the term "disease" has connotations of being unsightly, progressive and contagious."
I doubt that (locally) anyone actually thinks epilepsy is progressive or contagious, or that if they did, simply calling it a disorder and not a disease will change their perception. Still, I may be wrong.
As for 'unsightly'... will calling it a disorder really make a difference to what a grand mal episode looks like?
By
angry doc, At
August 21, 2007 9:39 pm
I generally feel that to the layman most of the time disease, disorder, or whatever fancy politically correct term they give still leaves negative connotations. It's through understanding that we remove stigma, but being humans, or *gasp* Singaporeans, we generally don't give a damn until one of our loved ones are stricken with the said condition.
Is mental illness more or less negative than mental disorder or mental dysfunction? I don't quite think so.
By
Unknown, At
August 22, 2007 12:21 pm
angry doc said...
I doubt that (locally) anyone actually thinks epilepsy is progressive or contagious, or that if they did, simply calling it a disorder and not a disease will change their perception.
A few points.
Words do create negative or positive impact. If they are *neutral* in their impact then spinmeisters like Karl Rove would be out of work.
Call "torture" "extraordinary rendition" and suddenly torture becomes more acceptable.
The epileptic Americans clearly make this distinction preferring to call it a "disorder" precisely because it does not carry a negative connotation.
Do Singaporeans associate these words (disease/disorder) in the same way that Americans do?
I am guessing we don't. We tend to be loose in our usage of English.
As an example, we tend to make no distinction between "sending" someone to the airport" and "bringing" someone to the airport which can of course have hilarious consequences.
I doubt that (locally) anyone actually thinks epilepsy is progressive or contagious
I doubt that the average Singaporean even knows what epilepsy is never mind whether it is progressive or contagious.
PZ
By
PZ, At
August 22, 2007 3:58 pm
To be honest I can't agree with trying to remove stigmatisation by calling something by a different name.
Calling epilepsy a disorder or a disease is not going to make it a more pleasant condition to have, and as long as it is not a nice condition to have, whatever term you use for it will gain and carry the negative connotations associated with that condition.
The best way to remove stigmatisation is for us doctors to *cure* all these pesky diseases/disorders/conditions, isn't it?
By
angry doc, At
August 22, 2007 6:22 pm
That would be a task left to the pharmaceutical companies or all those DNA modifying scientists/surgeons. Doctors may then be rendered quacks. How times will change. =)
By
Unknown, At
August 22, 2007 8:26 pm
angry doc said...
To be honest I can't agree with trying to remove stigmatisation by calling something by a different name.
Stigma of certain diseases arises from ignorance, frightening experience to witness, culture and organised religion. Its removal accordingly needs to address these areas.
To the extent that replacing a negative term - disease which might mean to the general public that it is contagious with disorder to associate it with "not contagious", I can see the benefit.
It is a necessary but insufficient condition. More needs to be done.
Public education to remove ignorance of the disease:
- That it is just misfiring of electric impulses in groups of nerve cells (neurons) found in the brain.
Since the term epilepsy itself carries a negative connotation, perhaps we should start calling it *brain seizure disorder* (BSD) for a start?
He is having a BSD episode. No biggie. :-)
PZ
By
Anonymous, At
August 22, 2007 8:28 pm
"He is having a BSD episode. No biggie. :-)"
He still ain't gonna drive a bus!
By
angry doc, At
August 22, 2007 8:42 pm
The day will come when some Public Relations genius comes up with a way to de-stigmatise medical conditions to the point that it becomes desirable to have them!
That would be the day man.
"Hey bro, I have epilepsy"
"Oh that's so cool, I heard them talking about it, you guys get to do those jerky movements that look soooo coooool, how I wish I had epilepsy too. After all it can be controlled. So if you want to jerk you jerk. Otherwise no jerks!"
By
Dr Oz bloke, At
August 23, 2007 7:03 pm
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