Upset by information handed out at work

[seizingbeauty]

Hey all,
I received an e-mail today regarded Invisable Disabilities. I was a little disturbed by the section on Epilepsy. Can you let me know if I'm being over-sensitve or if they need to update their info.

Epilepsy
 People with epilepsy tend to have recurrent seizures (fits). The seizures occur because of a
sudden surge and overload of electrical activity in the brain, causing a temporary disturbance in
the messaging systems between brain cells. During a seizure the patient's brain becomes
"halted" or "mixed up".
 Epilepsy is usually controlled, but not cured, with medication. It becomes more common as
people age.

Thanks

 

[CathyAnn31]

***hugs***. I'm sorry it bothered you. Maybe you could use it as a teaching tool to get more info out there?

I don't think it would have bothered me, but then again, I'm one of the lucky ones in that my seizures are controlled by my meds. I did develop e later in life, at 39.

 

[seizingbeauty]

I think the wording of (fits) annoyed me and the lack of explaination regarding what a seizure is, especially given the in depth nature with they covered other issues including autism, depression, and other mental health issues. It felt like this section was simply frosted over

 

[Autumn Breeze]

If they gave other "silent disabilities" more attention, it does seem like they glossed over it, and have used over simplified terms...especially if the handout is for adults.

Depending on what the rest of it looks like, I'd probably be miffed, and would end up re-writing the section and maling it back to them. It would likely even been cited for them.

 

[Cint]

I think the wording of (fits) annoyed me and the lack of explaination regarding what a seizure is,

I don't like the word "fit" either when it comes to explaining epilepsy/seizures.

Maybe you could send an email back with this info about Invisible Disabilities:

http://www.invisibledisabilities.org/coping-with-invisible-disabilities/its-all-in-your-head/

“It’s all in your head!” What a familiar refrain for those living with chronic illness, pain or disability. Doctors, friends, co-workers and family often make this statement when they can’t “see” what you are going through or find a diagnosis. The invisible nature of many illnesses and disabilities creates an atmosphere of suspicion or disbelief, even by those who are closest to you. People may say, “It’s all in your head” to imply that the person is just making up or exaggerating his or her condition. Many people live with the stigma of this label. Some even feel shame and believe so much that they themselves are to blame that they take their own lives.
Maybe it is “all in your head.” There are many conditions that exist as a dysfunction or disease of the brain. Depression, Alzheimer’s, schizophrenia, bipolar, autism, post-traumatic stress disorder (PTSD), traumatic brain injury (TBI), epilepsy, dyslexia, multiple sclerosis, Parkinson’s and ADHD to name a few. These are real disorders and diseases even though they are unseen, and in many cases go undiagnosed or misdiagnosed for years.

 

[CathyAnn31]

Yes, I don't like the word "fit" either. However, I've come to realize it's what's commonly used in other countries. If that's all they've ever used, then it's not their fault, know what I mean? It would take a longgggg time for the term to be eliminated there.

Fit makes me think of temper tantrum, but that's because we use the word in that way here in the US. We've never heard seizures refered to as fits. Thank goodness!

 

[Cint]

Fit makes me think of temper tantrum, but that's because we use the word in that way here in the US. We've never heard seizures refered to as fits. Thank goodness!

onder: Usually, fits in the U.S. is used in that regard. But when I lived in Memphis and had a few seizures, some folks did refer to them as fits.

 

[C0urt]

odds are it is glossed over for average people.
simple terms as possible

 

[tinathesingergirl]

I think I would need to see the rest of the email to see what the rest of theese "invisible" disabilties are to see i in context. Other than that it looks correct to me and I am not offended by the e-mail it just seems like they were just trying to see if people had the correct information or not. If not they can correct it, try to look at it that way some good can come of it.

Tina

 

[Rae1889]

I think personally its just fine. Yes we would all love more information out there, but in a simple hand out i think its just fine. In fact, I also like that they put the word fit in brackets. it shows that this is a name that used to describe a seizure, but isnt as common. but several people have never heard of what a seizure is and only heard the term fit. so its good to educate the people.

 

[jackier]

Sounds like they are trying to be PC (politically correct) by simply touching on a subject-without a full or correct explanation.

Sometimes seizures can be controlled, but are not always controlled-even with medication.

 

[Bernard]

People with epilepsy tend to have recurrent seizures (fits). The seizures occur because of a sudden surge and overload of electrical activity in the brain, causing a temporary disturbance in the messaging systems between brain cells. During a seizure the patient's brain becomes "halted" or "mixed up".

I think it would have been a lot more constructive if they had said something like this:

People with epilepsy tend to have recurrent seizures. There are many different types of seizures and most do not present with convulsions. The seizures occur when a sudden surge of electrical activity overloads the brain, causing a temporary disturbance in the messaging systems between brain cells. During a seizure the patient's brain becomes "halted" or "mixed up" and can involve a loss of (or impaired) consciousness. Patients can be post ictal after a seizure - appearing responsive but not actually fully conscious.

 

[tinathesingergirl]

I do agree with Bernards comments as presented above it would have been more constructive and imformative and even less scary for the average person to understand. More "approachable" if you will....

 

[petero]

to me the term "fits" seems a bit old, but it depends on the intended demographic as well

 

[seizingbeauty]

Thanks for everyones input! I wrote to the person in charge and gave Bernards suggestioned wording along with a few personal notes. I recieved a lovely letter apologizing if any of the information or wording was negative in any way. She said she extremelly greatful to recieve first hand information as non of her team are experianced with epilepsy.
Thought you would like an update

 

[seizingbeauty]

I just wanted to update everyone. I emailed the person in charge and relayed some of the comments from this post (Thanks Bernard!) Her's the new improved section on epilepsy

Epilepsy

· Epilepsy is a diverse set of neurological disorders characterized by surges in electrical activity inside the brain causing seizures. Seizure symptoms vary. Some people with epilepsy may stare blankly for a few seconds during a seizure, while others may have full-fledged convulsions.

· Epilepsy is usually controlled, but not cured with medication. However, over 30% of people with epilepsy do not have seizure control even with the best available medications. Epilepsy becomes more common as people age.

· There are more than 20 seizure types of epilepsy ranging from generalized tonic-clonic seizures involving loss of consciousness to complex partial seizures where a person usually remains conscious. During complex partial seizures (simple partial or simple lobe), a person may exert odd behaviours.

· After a seizure, many people can be post ictal – appearing responsive, but not actually fully conscious.


I know I am thrilled :woot:

 

[CathyAnn31]

Awesome update.

 

[tinathesingergirl]

Excellent response from your employer! A victory won I would certainly say on all levels. Hooray!!! And people are more educated becasue of your persistance.

Tina

 

[RunningGirl85]

I think the wording of (fits) annoyed me and the lack of explaination regarding what a seizure is

I agree with this statement. I hate the word fits. Though I will say epilepsy is really hard to explain to people... I have a hard time explaining it without going in depth on the other things that go on.

But other than that, I think it's okay.

 

[RunningGirl85]

I just wanted to update everyone. I emailed the person in charge and relayed some of the comments from this post (Thanks Bernard!) Her's the new improved section on epilepsy

Epilepsy

· Epilepsy is a diverse set of neurological disorders characterized by surges in electrical activity inside the brain causing seizures. Seizure symptoms vary. Some people with epilepsy may stare blankly for a few seconds during a seizure, while others may have full-fledged convulsions.

· Epilepsy is usually controlled, but not cured with medication. However, over 30% of people with epilepsy do not have seizure control even with the best available medications. Epilepsy becomes more common as people age.

· There are more than 20 seizure types of epilepsy ranging from generalized tonic-clonic seizures involving loss of consciousness to complex partial seizures where a person usually remains conscious. During complex partial seizures (simple partial or simple lobe), a person may exert odd behaviours.

· After a seizure, many people can be post ictal – appearing responsive, but not actually fully conscious.


I know I am thrilled :woot:

Ah, just saw this. That is great!