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Hi, I'mKevin Shoffner

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Let’s Take Hold of “The Sacred Disease”

Have you ever heard of the “Sacred Disease?” If you haven’t, you might learn something today.

[ Hippocrates wrote about it around 400 B.C. describing how ignorance of men thinking it was something from divinity only because there was nothing else like it, Julius Caesar suffered from but didn’t let it stop him from being a one of the most powerful rulers of this world, and even Othello’s jealously would cause him to struggle with the condition.  Do you know what I am talking about yet? ]

What if I told facts about how human society all thru different decades also can offer up facts such as:

  • Witches would give it to people, or maybe it was contagious
  • In the 19th in was highly common to, and even in 20th century U.S. states, sterilized people with the condition (the last 18 U.S. states stopped in 1956).
  • You couldn’t go to lots of public places (restaurants, theaters, etc) until the mid-1970s
  • Heck you couldn’t get married until a repealed law in 1980. In some cultures to this day, if it is determined you have this disease, your partner can annul the marriage

It’s one of the oldest known diseases, but there is still so much ignorance towards it and so much stigma towards it. I would dare say in the last 2,500 years, there is just about the same amount of ignorance towards this disease as when Hippocrates wrote about it. Heck, there are probably even people out there who think, “you are not born that way, it’s a life choice” but maybe I would be pushing it.

I digress.


Let me ask you this:

How much do you know about breast cancer, and how scary it can be?

Have you ever heard of Parkinson’s disease, multiple sclerosis, cerebral palsy, and/or muscular dystrophy?

 

Of course you have… Unfortunately, you probably even know at least one person who struggles with one of these conditions. You also are probably aware of what at least some of the side effects these conditions have for a person affected by them.

What if I told you there is one condition that is just as common as breast cancer, and affects more than the above conditions combined, yet you probably don’t know much truth behind the disorder?

Don’t get me wrong, these are all major life changing conditions and I am not making light of any of them, but the condition I have actually has just as much impact on people, but isn’t known to be as widespread as the above conditions. This being said, the next part may surprise you.

your-beliefs

 

In America, Epilepsy is just as common as breast cancer and takes just as many lives (roughly 50,000 lives in America each year). Also, it’s on the rise with the veterans of Iraq and Afghanistan wars who suffered any type of head injury.

No way Kevin. There is no way that many people have epilepsy?

Most people think all people with epilepsy fall down and start shaking and flopping around like cooking bacon. Unfortunately this is not an accurate stereotype.

Some people even think a person having a seizure could shallow their tongue, although that is almost impossible. Since a human tongue is connected to the bottom of their mouth, they would have to saw off their tongue completely before they could swallow their own tongue.  My guess is, if they have shallowed their tongue, having a seizure is probably the last thing on their mind at that moment. You can read more about this here (http://www.nytimes.com/2008/04/22/health/22real.html)

Also there are some who believe when a person is having a seizure it is best to stick a spoon or something in their mouth.  Although a person having a seizure would appreciate the sentiment of a good samaritan, that same sentiment could actually cause a great deal of harm.  The person undergoing their seizure if likely to having mouth injuries, broken teeth, and probably of visits to the dentist. I like good samaritans, but I don’t like going to the dentist, so please don’t give me a spoon to eat 🙂

There are over 40 types of epilepsy, and even more types of attacks. Heck some people with epilepsy do not have noticeable seizures of any type. When children’s brains are still forming they could have them because their brain is still forming and growing. They stop or freeze in place for a few seconds, and they are fine afterwards. Of course, there are people who have convulsive (grand-mal) seizures, and those are displayed by a much more obvious observation, but there is so much more to this disease. So, so much more.

Even so, funding for this condition is very limited, for many sad reasons. It is a known fact that only about $35 is devoted to an individual U.S. patient, while a comparison of roughly $130 and $280 is devoted to Alzheimer’s and multiple sclerosis patients respectively.


Now having the above information in mind does the thoughts below, which I originally reflected on previously, have more context as to why I some of my original feelings where so strong and depressing. 

As a person who was diagnosed when I 16 years old, I remember thinking “Crap, my life is over” and “I am going to be such a burden, I might as well help everybody out and fix that problem…” Lots of depression set in at first. Luckily, I realized very soon that my life was not over with, and I could provide a lot of things to this world. I approached my condition with the the attitude of, “I am not going to let the diagnosis define me… I will define myself.” For the most part, I still do not tell people right off about my condition because of the amount of ignorance behind the condition.

 

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