epilepsy is now a disease you can outgrow

[kirsten]

No, I'm not saying epilepsy is a psychiatric disorder. The DSM is just a good resource for the medical definitions of diseases and disorders. It shows us what the differences are in terms of medical criteria, which are different from anything you will find in an English dictionary. You can join the MIMS site and get the same information there if you have the inclination.

When you have the flu, sneezing is a symptom. You might stop sneezing for an hour, but you will still have the flu even while you aren't sneezing. It's the same with epilepsy. Epilepsy is not seizures. Epilepsy is the etiology, the actual problem. Seizures are the symptom. If epilepsy really did come and go, you would be able to stop taking medication and not have seizures immediately as a result because your epilepsy would have gone away on its own and would come back on its own, regardless of what meds you took when.

Think of epilepsy as being the dog and seizures as being the dog's fur. You can shave off all the dog's fur, but that doesn't stop the dog from existing.

Even if epilepsy did come and go, it wouldn't preclude it from being defined as a disease. There is nothing in any definitions in the English dictionary or medical dictionary, that states that all diseases last forever and/or are fatal. Why do you think that? I had salmonella when I was 20. I will probably never get it again, and if I do, it won't be because I have some underlying salmonella disease that was in remission, it will be because I was exposed to salmonella in some food that I ate. People get TB once in their lives and never again. People probably never get the same flu virus twice because flu viruses evolve and change every year. That's why you need a new flu shot every year. Diseases are not defined as something that always comes back and goes away, or something that kills you in the end.
The paper we're talking about with the new categorisation of epilepsy was written in March this year. The epilepsy 101 page was last updated in January this year.

 

[Ruth]

Let's go on to the MIMS site.

http://www.mims.co.uk/go/mims_monthly

MIMS is one of the most up-to-date prescribing references for health care professionals.

MIMS is about prescribing medications.

Here is the paper from Epilepsy 191 from March 20 of this year:

http://www.epilepsy.com/learn/about-epilepsy-basics

It says that epilepsy is a condition.

When you quote from the DSM IV book you are saying that it is psychiatric.

 

[kirsten]

When you quote from the DSM IV book you are saying that it is psychiatric.

When I quote something about epilepsy from the DSM, I am saying epilepsy is psychiatric. When I am quoting medical definitions from the DSM, I am saying nothing of the kind.

 

[kirsten]

I'm not sure if you read the paper or the one that came with it, or whether you're aware of what the ILAE is?

I recommended MIMS as a resource for the medical definitions of disorders and diseases. It's a database of pharmaceuticals. It's not a global authority on epilepsy. That is what ILAE is. I actually cited the date of the paper incorrectly, though--it was published on 15 April. In any case, it might help to understand the motivation behind this new definition and where it comes from and what they hope it will achieve.

This practical definition is designed for clinical use. Researchers, statistically-minded epidemiologists and other specialized groups may choose to use the older definition or a definition of their own devising. Doing so is perfectly allowable, so long as it is clear what definition is being used. In the process of developing the revised definition of epilepsy, consensus was reached by forging opinions of 19 co-authors of the publication, while accounting for criticisms by five anonymous journal reviewers and over 300 public commenters on the ILAE website. The revised definition is not perfect. It will become more useful over time as we gain better information on seizure recurrence risks. But for now, the new definition better reflects the way clinicians think about epilepsy.

And this is the paper we are discussing. http://www.ilae.org/Visitors/Centre/documents/Definition2014-RFisher.pdf
And this is one example that demonstrates the actual clinical value of changing the way epilepsy is categorised.

Epidemiologists and other researchers would need to decide whether
to use the new or old definition and how this might affect
trends and comparisons. Rules and regulations might have
to be changed. Arrayed against these potential negatives are
positive aspects to reevaluation of the definition. The current definition requires two unprovoked seizures occurring
at least 24 h apart.2
Some epileptologists recognize and feel
a need to address circumstances with high risk for future seizures after a first unprovoked seizure. For example, one
Delphic study group in Spain3
voted with high consensus in
favor of treatment in five of seven hypothetical scenarios
after a first seizure. A decision for treatment does not necessarily equate to a diagnosis of epilepsy, but it can be taken
as a marker for belief in a strong enduring predisposition for
further seizures.

And this is a more direct explanation for their working through the process of changing definitions.

Epilepsy has traditionally been referred to as a disorder or
a family of disorders, rather than a disease, to emphasize
that it is comprised of many different diseases and conditions. The term disorder implies a functional disturbance,
not necessarily lasting; whereas, the term disease may (but
not always) convey a more lasting derangement of normal
function. Many heterogeneous health problems, for example, cancer or diabetes, comprise numerous subdisorders
and are still considered to be diseases. The term “disorder”
is poorly understood by the public and minimizes the serious nature of epilepsy. The ILAE and the International
Bureau for Epilepsy (IBE) have recently agreed that epilepsy is best considered to be a disease.

 

[Ruth]

I'm not sure if you read the paper or the one that came with it, or whether you're aware of what the ILAE is?

Kirsten, I did read the paper that you gave me the link too. It was a summary by Dr. Fisher from the Stanford Medical Center. That is by Palo Alto, California, an excellent hospital and well known throughout the USA and overseas.

When you put in a link, each page has it's own link that you put down. The link is at the top of the page.

I looked up http://www.ilea.org

ILAE stands for the International League Against Epilepsy.

 

[Cint]

Yes, cancer comes back until you die. Both of my parents and an uncle died of cancer. There's went into remission several times.

True, some people do die from Epilepsy, but most people live a full long life with it and die of something else.

I have had seizures from Diabetes. Epilepsy specifies where the seizure came from.

So yes, cancer is a disease as is diabetes and epilepsy. Many members of my family have died of cancer and now my sister has breast cancer. She had breast cancer return after 10 years and last summer had a double mastectomy. Now she's had nothing but problems. I have Type 1 Diabetes, also, and as long as I keep my glucose levels within range, I'm fine. As all of you know, I have refractory epilepsy, too. I've tried nearly everything available to control my seizures, to no avail. After my lobectomy, my seizures came back worse. They couldn't do another surgery because the damage was deep in my hippocampus. I would have ended up not being able to speak or understand.

So after saying that, IMO, epilepsy is a disease. Read what the ILAE says and read the link Kirsten posted.

 

[Cint]

When you put in a link, each page has it's own link that you put down. The link is at the top of the page.

I looked up http://www.ilea.org

ILAE stands for the International League Against Epilepsy.

onder:
:bigmouth:

 

[Bernard]

...
And this is a more direct explanation for their working through the process of changing definitions.

Epilepsy has traditionally been referred to as a disorder or a family of disorders, rather than a disease, to emphasize that it is comprised of many different diseases and conditions. The term disorder implies a functional disturbance, not necessarily lasting; whereas, the term disease may (but not always) convey a more lasting derangement of normal function. Many heterogeneous health problems, for example, cancer or diabetes, comprise numerous subdisorders and are still considered to be diseases. The term “disorder” is poorly understood by the public and minimizes the serious nature of epilepsy. The ILAE and the International Bureau for Epilepsy (IBE) have recently agreed that epilepsy is best considered to be a disease.

I can't recall the last time I heard anyone refer to cancer or diabetes as a disease, but I understand what they are saying. I've always thought of "disease" as holding a connotation for contagion, but if the proper definition doesn't infer that, I suppose it could be appropriate.

I'm not sure I agree that anyone thinks epilepsy is a "short term functional disturbance" though - whether one calls it a disorder or a disease.

 

[Ruth]

I've always thought of "disease" as holding a connotation for contagion, but if the proper definition doesn't infer that, I suppose it could be appropriate..

I have Alzheimer's Disease or Parkinson's Disease, depending on which of my doctor's you ask. They are not contagious but they are still considered diseases.

Thank you for clarifying it for me.

 

[Cint]

I can't recall the last time I heard anyone refer to cancer or diabetes as a disease, but I understand what they are saying. I've always thought of "disease" as holding a connotation for contagion, but if the proper definition doesn't infer that, I suppose it could be appropriate.

I'm not sure I agree that anyone thinks epilepsy is a "short term functional disturbance" though - whether one calls it a disorder or a disease.

As I've said, I have Type 1 Diabetes and see an endocrinologist to help manage it. He always refers to diabetes as a disease.

And from http://www.diabetes.org/diabetes-basics/type-1/?loc=db-slabnav

Diabetes is a disease that affects the whole family,

I sure wish epilepsy were only a "short term functional disturbance".

 

[kirsten]

I'm not sure I agree that anyone thinks epilepsy is a "short term functional disturbance" though - whether one calls it a disorder or a disease.

This is really the point of the definition change: they say int he paper that they want to use a term that reflects the way clinicians currently view epilepsy. Since clinicians don't view is as a short term functional disturbance, the term 'disorder' is inappropriate.

 

[Cint]

This is really the point of the definition change: they say int he paper that they want to use a term that reflects the way clinicians currently view epilepsy. Since clinicians don't view is as a short term functional disturbance, the term 'disorder' is inappropriate.

:agree:

 

[masterjen]

The difference between a disease and a disorder, condition, is that a disease leads to death. True some people die from epilepsy, but not everyone.

I think that the assumption that a disease leads to death is a common misinterpretation of the word "disease". The word disease is also thought to imply progression of a disorder. These two issues might be the biggest obstacles in accepting the new definition of epilepsy as a "disease". The first step in redefining epilepsy has to be operationally defining the words chosen to redefine epilepsy, and this must be made clear by the ILAE, etc.

 

[kirsten]

I've always thought of "disease" as holding a connotation for contagion, but if the proper definition doesn't infer that, I suppose it could be appropriate.

You're thinking, maybe, of infectious disease. There are also physical disease, inherited diseases, degenerative disease, and a bunch of other categories.

 

[Athena22]

My neurologist always told me that since I had my epilepsy since I was 12, that I might outgrow it when I become an adult, around the age of 17-20.
They emphasized the "might" when they stated that. Because I still have epilepsy. But they have told of cases where kids did outgrow it when they grew into adulthood.

 

[Ruth]

My sister outgrew it and I did not. My sister got it back again.

 

[BlueCat]

My neuro refers to it as a condition not a disease. I would tend to agree with that definition.

 

[Ruth]

BlueCat, if you look up the Epilepsy Foundation 101, they say it is a condition.:agree:

 

[StaceyJane]

I used to think that my epilepsy had been *cured*! I thought that because I had been seizure & medication free for 15 years that my epilepsy had gone away! I've always had really bad memory problems and thought it was more to do with me smoking weed as oppose to me actually having brain damage! However after having my seizure on Wednesday I'm now debating my whole outlook as far as epilepsy is concerned! I'm not sure if you can ever guarantee someone that they will never have another seizure

 

[Belinda5000]

DR's use to tell my mother I'd probably outgrow my epilepsy.
Where they ever wrong when I was a kid myI was dx'd at the age of two.
I've had a RTL,VNS and taken more meds I care to admit sometimes.:agree: