The ADA's of epilepsy

>> Tuesday, October 27, 2015

This ADA world we live in is getting more depressing by the moment. The disparity, the horrific abuses, the apathy...all of this I have seen the last two days not to mention the atrocities of the last 10 years. I know there are wonderful people out there that see my son as a young man that needs patience and understanding and deserves compassion and acceptance. Then there are those that see him as a burden, as someone taking resources that they are paying taxes to maintain and is a waste of their money. I like to think that there are more of the former than the latter but I have been in this epilepsy world for a full decade as of two days ago and before that, the cognitive impairment world, I can tell you...epilepsy is different. It's treated differently. People with epilepsy are treated differently.

And yet:

It's an ADA compliant condition.
There is no greater chance of cognitive impairment than the general population.
Over 3 million people in the US live with active epilepsy and over 100 million know someone with epilepsy.
30 Million people KNOW what a seizure feels like. They have had at least one.

So why:

Does epilepsy research get less funding than contraception? Less than HIV/AIDS? We spend more money on sleep research than on epilepsy. (http://report.nih.gov/categorical_spending.aspx)

The plight of people with epilepsy is largely ignored. Is it because, in most cases, a cause for the seizures is never known? Maybe that's because we spend so little on research? Genetic epilepsies are being found nearly every month this year and the research funding for genetics is impressive. Obviously, if we really look...we will find some answers.

But why does the average, reasonable person, make such horrible comments about epilepsy?  Why is it funny? I can assure you finding Bug laying on the floor, blue, in full convulsion, is not funny. Yet some people will stand by and watch without trying to help. Some people will steal money from him, take his wallet (if he had one). Police will arrest him for being disorderly while coming around from a seizure and if he were a woman...he runs the risk of sexual assault. All of these things have happened just this year around the world. For those of you calling BS:

Liverpool News - Epileptic man 'robbed' during seizure in Kensington

Epileptic man arrested for DWI sues Dallas PD

Woman was sexually assaulted and had her iPod stolen as she suffered epileptic fit in public park

And then, there is this:

Former teacher pleads guilty in assault of autistic boy

The last one is very upsetting to me personally and I will, most likely, detail my thoughts on that particular type of depravity later. Professionally, I am disgusted by all of these negative stories I hear. And I hear a lot of them. We pretend to be so enlightened.  We are concerned about animals and the environment because we know more and are more civilized than generations before us. But those generations before us, while misinformed, thought that people in seizure were touched by God. Some thought of them as being 'enlightened' during a seizure, in a sense, some societies revered people with epilepsy. Others thought people with the 'falling sickness' were possessed of demons.

Candidly, I like the idea of a supernatural etiology a lot better than the reality. The reality is most people never know the cause of their seizures, and those with a comorbid condition rarely recognize, nor does the CDC record, their seizures as epileptic. So let's say it together: I have epilepsy. I have had more than one seizure. It's Ok. I promise, with all my sad stories, it will be OK. These negative stories, they have to be told. They have to be told so they don't happen again. WE have to make sure they don't happen again.

The definition of epilepsy changes over time but the community of people living with it don't. They are from every walk of life, every socioeconomic group and nationality.  There is no one group of people more predisposed to having epilepsy than another, nor a gender more prone. The fact is: we ALL have a seizure threshold, any one of can have a seizure at any given time, if the conditions are right. Some of us have a lower threshold and seize more often and for a variety of reasons.

The fact remains: if you have a seizure you may never have another or you may seize for the rest of your life but you will ALWAYS find people to support you. And you will always find people that will exploit or abuse you in their ignorance. You will have medical professionals that have no idea how to respond to you having a seizure. Not just because they have never seen one, but because they are not taught in depth about seizures and epilepsy. You read that right: there is NO chapter on epilepsy, and the many types of seizures, in any medical course not expressly dedicated to the treating of the condition. It is overlooked as being a specialist-only condition.

This confounds my common sense. As it should for anyone. If you have a 1 in 10 chance of having a seizure in your lifetime and a 1 in 26 chance of being diagnosed with epilepsy, why do we not teach about it everywhere? Why do we not spend as much time on it as we do diabetes in our health classes? I ask these questions because I believe in education. I believe that if you take the time to teach someone about a condition, it becomes more accepted. Crazy idea isn't it? The more you know, the more you accept what you know. And, also, what you don't know. You become...enlightened.

In Utah, the Epilepsy Association of Utah has a complimentary Get Seizure Smart! Class. Complimentary! There is no excuse for ignorance, and only a fool would remain ignorant. We have presented this 15-60 minute class (based on requirements and requests) to thousands of people and hopefully enlightened a few of those about epilepsy to help make acceptance happen. While I am thinking about it, you can now view it online: Seizure Smart.

Seizures are scary, but the Bugster is not scary. We accept seizures as normal for our family, even as much as we hate them, Bug is in our family and we accept and love him and all his smiles and seizures. Lately, there are more smiles than seizures and for that I am eternally grateful. It is that reason, his smiles, that I fight for all people with epilepsy. His smiles, that were gone for so long. His smiles, that medical professionals forgot he had and now, will never forget.


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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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