April 1, 2011

Testimony to the IOM

Very recently, I was supposed to offer testimony to the IOM. This group is looking into epilepsy and how best we can help persons with epilepsy. So, they have formed a series of meetings and have invited everyone with an oipinion to step forward and offer suggestions.
The Institute of Medicine is funded by the National Science Foundation, and might be able to assist us in some fundamental ways. Their next panel discussions are in June, Washington D.C., so anyone interested should Google them and see about attending.
Here's what I wrote to them:

There is a terrible gap in the quality of care owing to a lack of comprehension about epilepsy. The phrase “a commonly occurring

neurological disorder” frequently leads laypersons and professionals to

assume that epilepsy is not serious or dangerous to the patient. A more

refined amendment to approaches in medical school education would

benefit patients of all ages, and might make general practitioners and

neurologists more comfortable treating their patients with epilepsy.

Within the past ten years, I have been told by neurologists that “It

could be worse, at least epilepsy can’t kill you” and “Well, we’ll see if you

really have epilepsy: I will take you off all of your medications, and then if

you seize, we will know for certain”. During the same time, GP’s have

suggested that a tonic-clonic seizure has not occurred unless it is

accompanied by urination” and “It is very easy to fake epilepsy. Some of

you people do it for the attention.”

Clearly, these are physicians who are behind on their reading and

who might benefit from a specific educational approach. Initially, I would

suggest a survey into the Attitudes of Physicians toward their Patients

with Epilepsy.

Because physicians can, by their personal attitudes, enhance or

diminish stigma to epilepsy in the community and within the family, they

are also central to quality of life issues. Additionally, physicians with poor

knowledge of epilepsy often have the tendency to view this disorder

according to the germ theory model. They become easily frustrated when

they cannot fulfill their own expectations to find a cure for epilepsy; this

can breed hostility between patient and doctor.

It is also important that health insurers be more broadly introduced

to the neurological sub-specialty, epileptology. The diagnostic codes and

data used to make referral decisions for patients could be smoothed if this

category were supplied to them as a legitimate category in neurology.

So it seems that I am speaking about the need for a more intensified

educational approach, not only for the public at large, but also for the

professional population as a whole.

Treating epilepsy can be as frustrating for doctors as it is for

patients. Still, passing along bad information or resorting to cruelty is not

an answer. A cardiologist would not suggest taking a new heart patient off

his medications to see if he would have a heart attack to confirm a


Perhaps one of the more ridiculous “cures” ever provided happened

when I was a child. In about 1960, my mother went to see a neurologist.

She talked about me with the doctor, describing my condition in detail. She

mentioned to him that I had long red hair and that she brushed my hair

every morning. She told him that I frequently seized during this process

and more than once, it had triggered status epilepticus. He thought about

what she told him for a moment then concluded that it was my hair that

was the problem. My hair, he told her, was too heavy for my head and

should be cut short to relieve my seizures. She cut my hair off that very afternoon.

So it seems that I am speaking about the need for a more intensified educational approach, not only for the public at large, but also for the professional population as a whole.

We have all learned a lot in the past 55 years of studying and living

with this disorder. I can hardly wait to see how much more we can change

things, together.


riverking said...

I am so glad that you are getting involved this way. I agree that there is a lot more education about epilepsy needed for the professional population. I had a couple of experiences with my daughter that left me just shaking my head, one was a time she went into status epilepticus, but it was an absence seizure, when we went in to the emergency room and the nurse came in to take the information she asked how long the seizure had lasted I told her 2 hours and she was still in it, she laughed and said "no, I mean the REAL seizure, you know with the shaking" I let her know that this IS a REAL seizure. another time she was going into surgery and the nurse said they need to get a "seizure kit" to send into the ER with her. When I asked what a "seizure kit" was she said that it was just a kit with a tongue depressor in it to put in her mouth to keep her from swallowing her tongue. This was only a few years ago, long after they found they should never put anything in the mouth during a seizure. I love the different sites I have found lately with up to date info about epilepsy. another site that I found is www.epilepsyconnect.com . I'm sorry this got so long I am just very opinionated about this subject as you can see.

Karen Swim said...

Paula, we have made many friends in the epilepsy community and stand with you in your efforts to narrow the gap for people with epilepsy. The funding and research disparities are appalling. Reading about past "cures" made the hair on the back of my neck stand up but also gives me hope for the work being done today. Thank you for your advocacy and sharing so freely with the public. You are wonderful!

hernia surgery Los Angeles said...

There should be no stigma attached with this disease on any in that matter.There are health situations in life for no ones fault and they have to dealt with medically and mentally.

Anonymous said...

Thanks for this...my son has epilepsy and after seeing numerous neurologists who told us the worst imaginable, I finally learned how to treat his seizures myself using homeopathy. Most regular medical docs don't have a clue about what is really going on. For anyone wanting more info feel free to contact me at portlandfmailyhomeopathy.com adn thanks again for posting this, I know how frustrating it can be.

Online drugstore said...

The information and the detail were just perfect. Many thanks for this very useful information you have provided us.