epilepsy is now a disease you can outgrow

[DayDreamer]

I'm sure this has all been read on other epilepsy sites. It has been available for a few months and there is no major news from my perspective, but after reading some threads here I thought I would post this as it seems as medical science in changing and we should be kept up with current hypotheses.

The 2014 Definition of Epilepsy: A perspective for patients and caregivers
http://www.ilae.org/Visitors/Centre/Definition-2014-Perspective.cfm
This page and the full report available at the bottom of the site go over some changes of diagnosis, classification and terms to be used in epilepsy. It is now to be considered a disease that you can outgrow.

There were also a good few documents from Epilepsia going over the pros and cons of these new classifications terms focusing on consciousness in partial seizures. I found the latter ones interesting in themselves.
http://www.ilae.org/Visitors/Publications/documents/GreyMatters-2013-6.pdf

 

[Belinda5000]

Epilepsy has been something that could be out grown for a long time.That's nothing newIt's not always possible to outgrow epilepsy.
I had a cousin who se seizure =s stopped after he got so old, his mother still has epilepsy and his grand father has it till he died.

 

[DayDreamer]

Communication is oh so much fun without face to face contact.

The statement made in the article published is that epilepsy has now been defined as a disease rather than a condition world wide.
Also it would also be safe to mention that you had had seizures/ epilepsy when applying for your pilot's license as it is something that you can be cured of. (I assume this will be sometime in the future differing by country.)

 

[Cint]

Also it would also be safe to mention that you had had seizures/ epilepsy when applying for your pilot's license as it is something that you can be cured of. (I assume this will be sometime in the future differing by country.)

I don't think so. I was married to a pilot and that would more than likely not happen if it is on their record, at least here in the U. S.

 

[N Sperlo]

Communication is oh so much fun without face to face contact.

Without a doubt. A friend brought that to my attention this afternoon while I browsed through "WTF Faces" on google to clearly portray my feelings to comments.

I was thinking the same way as Belinda, though.

In regards to the articles, I'm slowly reading them and finding them very interesting. Thanks for posting them up.

 

[DayDreamer]

Because I am not understood, I will stop trying after this last attempt.

There are changes being made in the definition of epilepsy, the diagnoses of epilepsies and how it will be viewed in the medical community. How you will be viewed if you have not have a seizure for ten years, no matter what your age, depending on what type of seizure you had. It may only take one seizure to be classified as having epilepsy, it may take more.
Many people in the past even if they have outgrown their CONDITON, lie when applying for jobs. They are changing epilepsy to a disease that can be resolved, finished, cured if you read the articles. Hopefully this will be recognized by society soon.

 

[Ruth]

That is an article from International Reach. It is the 2014 definition of epilepsy.

Epilepsy is not a disease, it is a disorder of the brain.
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 have Alzheimer's Disease as well as an epilepsy condition. I have lived with epilepsy since 1949.

I have lived with Alzheimer's disease since 2008. I am dying from it. Everyone who gets a disease dies from it. It goes in Stages, either 4 or 5. I am in the third one. It does not go into remission, like epilepsy and cancer does.

Also, with a disease, you automatically get a caregiver. My husband and son are my caregivers. The day will come when they will no longer be able to care for me. I have all ready chosen where I want to go.

I will check with the Epilepsy Foundation or epilepsy.com.

 

[N Sperlo]

DayDreamer, I understood what you said, just not the first time. No worries.

 

[kirsten]

Now I finally understand why they''ve started calling epilepsy a disease. It seems that they're wanting to distinguish between one seizure and many, seizure disorders and epileptic seizures. To draw the line, epilepsy is a disease.

The word "disease" better connotes the seriousness of epilepsy to the public.

 

[kirsten]

I see. now they are making room for us to trash our epilepsy label along with our epilepsy--say if we have surgery or whatever. It seems before, once you had epilepsy, you always had epilepsy, even if you stopped having seizures.

Benign Epilepsy with Centrotemporal Spikes (BECTS).
A 22-year-old man had seizures with face twitching
when falling asleep at ages 9, 10, and 14 years; he has
had none since. EEG at age 9 years demonstrated centrotemporal spikes. Medications were discontinued at
age 16. Comment: For this young man, epilepsy is
resolved, because of passing the relevant age range of an
age-dependent syndrome. The old definition has no provision for considering epilepsy to be resolved.

 

[Ruth]

I see. now they are making room for us to trash our epilepsy label along with our epilepsy--say if we have surgery or whatever. It seems before, once you had epilepsy, you always had epilepsy, even if you stopped having seizures.

Do you mean by trashing our "epilepsy label" that we can just say we do not have epilepsy.

My father and sister both had epilepsy. I have known a few other people who have epilepsy. My father and sister no longer had epilepsy after they turned 16 years old. My father was able to drive and so did my sister.

A friend of mine would stop having seizures for 10 years. Then she was able to get a driver's license.

When my sister got elderly, her epilepsy returned worse than it had before.

Epilepsy is not a "disease." It is a chronic condition that can come and go. Or just go at the age of 16. It can return at any age. It's like the flu, it comes and goes.

 

[masterjen]

Everyone who gets a disease dies from it.

It is not true that everyone who gets a "disease" dies from it. I have Celiac disease, but it is not lethal. I have a metabolic disease affecting neural transmission, but it is not deadly either. Neither are curable, but they are manageable with treatment.

 

[Zolt]

Hey Jen,

I think Ruth was talking about Alzheimers and the stages.

iano: op:

 

[masterjen]

Hey Jen,

I think Ruth was talking about Alzheimers and the stages.

iano: op:

Oops - now that I re-read her post I see you may very well be right! Thanks

 

[Ruth]

It is not true that everyone who gets a "disease" dies from it. I have Celiac disease, but it is not lethal. I have a metabolic disease affecting neural transmission, but it is not deadly either. Neither are curable, but they are manageable with treatment.

Thank you for your correction. I did not know that Celiac was considered a disease. I am sorry that you have it. Several people on the forum have it.

The magazine that said that epilepsy is now categorized as a disease is in 2014.

I have never heard of that magazine before and I have heard of a lot of magazines. I am going to do research and find out what more reliable sources have to say about it. onder:

 

[kirsten]

Do you mean by trashing our "epilepsy label" that we can just say we do not have epilepsy.

Epilepsy is not a "disease." It is a chronic condition that can come and go. Or just go at the age of 16. It can return at any age. It's like the flu, it comes and goes.

Yes, I mean that we would no longer be medically classified as having epilepsy.

Cancer, too, often remits and comes back, and it's a disease.

dis·ease[dih-zeez] Show IPA
noun
1.
a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment.

 

[Ruth]

Yes, I mean that we would no longer be medically classified as having epilepsy.

Cancer, too, often remits and comes back, and it's a disease.

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.

If you are correct, then the name of the forum that Bernard gave, CWE is wrong. It has the word epilepsy in it.

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

 

[kirsten]

Nobody's questioning the title 'epilepsy.' The article just clarifies that those who, for example, have a successful operation or who grow out of their epilepsy as children, will no longer be said to have epilepsy. Just like when I get better from flu, my doctor no longer tells me I have flu.

There are tons of diseases that aren't fatal. Tuberculosis, for example. Flu is an infectious disease. Salmonella is a disease.

Also, epilepsy doesn't come and go like the flu. Epilepsy is either there or not there. Seizures are only the symptom of epilepsy. So take my case as an example: I have a brain injury. That can't come and go. If a neurosurgeon did a resection, or cut the injured part away from the rest of my brain, then my seizures might go away. Other than that, nothing can take that injury away. Perhaps, if I was really lucky, I might have seizures that came and went like the flu, but even when there were no seizures, I would still have epilepsy. in the vast majority of cases, adults with epilepsy have to stay on medication for life, unless they have a successful surgery. When you don't have the flu, you don't take medication for it. With epilepsy, we need constant treatment or we will have seizures.

 

[kirsten]

Here is the DSM IV's classifications--these will be the definitions the paper is using.

DISORDER
-like a syndrome, refers to a cluster of symptoms,

-but the concept includes the idea that the set of symptoms is not accounted for by a more pervasive condition.

-As with symptom and syndrome, there is no implication of etiology

DISEASE

-a disorder where the underlying etiology is known.

-It is the highest level of conceptual understanding.

In other words, they are now willing to say that we know exactly what underlies epilepsy and what causes it and what causes seizures.

 

[Ruth]

Kirsten, do you know what DSM-IV means?

http://www.allpsych.com/disorders/dsm-html

If I got the link wrong you can google DSM-IV. It's initials stands for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition

I will quote from it.

The book is typically considered the "bible" for any professional who makes psychiatric diagnoses.

The DSM-IV is published by the American Psychiatric Association.

Are you saying that we have a psychiatric disorder?

They kept that in there from when epilepsy was considered a mental disorder. That's why people with epilepsy were put in mental institutions, even in the 1950's.

Under Epilepsy 101, from the Epilepsy Foundation, it is called a condition.

When you get the flu again, it will go away. When I get another seizure, it will go away.
They both come back.

I have told you about my sister, so I will not repeat it. You can read my previous posts about her epilepsy.