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Encounter with epileptic episode changes perspective – We have already contacted the author

POSTING FOR DISCUSSION PURPOSES AUTHOR HAS ALREADY BEEN NOTIFIED ABOUT MISINFORMATION – EpilepsyU found this article on Viper Vibe. We wanted to share it and see what you think about this young woman’s perspective. Although she did not have a lot of knowledge of seizures or how to take care of someone who is suffering one, we applaud her for trying to help her younger cousin. Note that there is some mis-information in this article. We provide an explanation at the bottom of the article and have contacted the author to encourage her to change her statedments.

Seizures are symptoms of epilepsy, but they can also be symptoms of many other terrifying diseases. They are episodes of disturbed brain activity that cause changes in attention or behavior.

In the United States, about 2.5 million people have epilepsy and nine percent of Americans will have at least one seizure during their lives.

My 14-year-old cousin, Lauren Melendez, had a terrifying seizure. Unfortunately, I witnessed this spine-chilling event with my own eyes. To have to see my own cousin go through something traumatic like that killed me.

It all started in church; Lauren turned to me and said, “Kiana, I feel dizzy.” I thought she just didn’t feel well, so I didn’t really pay much attention to it. After I started to notice she wasn’t just dizzy, I took her to the bathroom to find the problem.

A youth leader of our church came in and sat with her in the corner of the restroom while I went to fetch her a glass of water. When I returned, she refused to drink it.

Then I thought to myself, “She needs something sweet,” so I left once more to get her some soda. I went to give her the glass, and she still wouldn’t drink it. She wouldn’t respond to my questions or actions. I kept repeating, “Lauren do you understand me? Do you hear me? Please speak!” I was shaking from how scared I was.

After a few minutes she finally responded with a nod and then went back to her earlier state. I then proceeded to put a lollipop in her mouth since she did not want to drink the soda.

Another youth leader left to tell her mom about what was going on while this was happening. Waiting outside with the car, I picked Lauren up and guided her to the bathroom door. She fell on top of me because she lost the use of her legs. My friend Andre was outside the bathroom door and helped me pick her up and place her on the ground.

Lauren started having a seizure. Two men whom were youth leaders carried her to the office and placed her on the couch. She grabbed my hand and stared at me blankly in fear, shaking my hand uncontrollably. I had a disgusting feeling in my stomach knowing I couldn’t do anything but be there for her.

After a while, the paramedics came, and Lauren’s expression completely changed. I looked at her and told her, “Lauren I’m right here, but I have to let go of your hand.” She clenched my hand tighter and tighter. The paramedics had to take her hand away from mine.

At that moment, I broke down crying hysterically. I walked out the room and Andre saw me sobbing and looked at Lauren and began to cry too. I felt terrible leaving Lauren by herself.

The paramedics checked her blood sugar realizing it was extremely low, 55 to be precise, and then gave her a solid meal.

She started to come back to reality and didn’t remember anything that had happened. It hurts to see my cousin in that state. This was her ninth seizure in two weeks.

This experience has changed my life in many ways. This experience relates to a young man here at the school. He was sitting in lunch and had a seizure in front of many people. They had to airlift him from the school.

Many people all over the world have seizures and they can be mild or intense.

What if this happens to one of your friends; do you know what to do? The most important thing to do is to take a spoon or even a wallet and put it in their mouth. The reason being is that they can bite their tongue off and swallow it.*

Also, turn them on their side and put a pillow or a book bag under their head so they don’t bang it on the concrete.

My cousin Lauren is still suffering from seizures.

Seizures can be many different things, so sufferers should go to the doctor and look at past family medical history just to be safe.

Original article: http://my.hsj.org/Schools/Newspaper/tabid/100/view/frontpage/schoolid/72/articleid/484574/newspaperid/48/Encounter_with_epileptic_episode_changes_perspective.aspx

*NOTE: To clear up what the author has written – Do not ever stick anything in someone’s mouth. A spoon or other hard object can fracture teeth and cause other gum and mouth injuries. A large object such as a wallet can cause asphyxiation. One can not bite off their tongue and swallow it. These are the myths that EpilepsyU was set up to debunk and educate the public. We are constantly scouring the internet for articles with misinformation like this so that it can be corrected. Misinformation like this, even with a good intent, can cause serious damage in the hands of the wrong person at the wrong time.

 

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5 Comments

  1. I would write a letter to the editor to ask them if this is an e-zine to edit it immediately. Her misinformation could kill someone. It’s a good thing she didn’t kill her cousin during the past two weeks. Putting something in someones mouth, from personal experience is a bad idea. It could first break their jaw, and choke them to death. No one should give medical advice without researching it and giving accurate advice. I am so glad you ran across this. It makes me sick, that people read this article, it’s articles like this and peoples ignorance about Epilepsy first Aid- and families not talking about it is why it is underfunded. She goes to that church- that church should be informed she has Epilepsy and what to do from a local EFOA affiliate or a free handout for her cousins safety. Everywhere she goes they should be that girls Advocate. Keeping quiet, will in the end have someone uneducated like this, related none the less who wasn’t told ending up sticking something in her mouth and harming her out of lack of knowledge. Because no one is taking responsibility to educate people about Epilepsy on this girls behalf.
    That is the problem with Epilepsy being invisible, you don’t have to talk about it.

    Her cousin should have been informed, the church leaders should have been informed- this article written by a family member could have been written as an Epilepsy Awareness Article instead of an inaccurate worse case scenario, that I hope no one ever reads article. WOW. This is why people need to speak out and tell people- tell everyone your child comes in contact with everywhere. It is NOT something to hide. But still, people do. And, this is what happens. It is such a shame, for the girl.

    On the other side of the spectrum, I applaud the parents who speak out on behalf of their children or themselves and educate others and raise awareness about Epilepsy. Thanks EpilepsyU.

    Reply
  2. Profile photo of Carol Carmella

    Oh my!!! This is a perfect example of how we ALL need to educate everyone around us on proper Seizure First Aid. Family, friends, cousins, aunts and uncles. It shows how much work is needed in education.

    Reply
  3. Profile photo of EpilepsyUni

    Thanks ladies! We are so glad you agree and got the point of why we shared this article. This is exactly why we were founded. It hurts to hear that even close relatives who actually do care and try to understand still aren’t educated or knowledgeable about epilepsy treatment / caregiving (and even worse, act like they are). This trend must change so that people who are affected can have less risk of being injured or worse by others.

    Reply
  4. Profile photo of EpilepsyUni

    Update: @Mary I did write a letter and here is the response from the educator/editor:

    I understand your concerns regarding this article. However, the website you are referring to is for high school publications and the article was written by a high school student. I was more than happy to post your comments to the article, however, IMMEDIATELY is not possible at this time. We are on Winter Break and I will not see my students until January. At that time, I will speak with her about addressing yours and many other concerns. It is important that my students learn their responsibilities as a reporter and that there may be consequences for what they right. They must also learn that when they make mistakes, they must correct them. Our next issue will go out sometime at the end of January. You can look for her response then.

    Reply
  5. Profile photo of Deanna Kirtman

    Thanks EpilepsyU for being pro-active and reaching out to the publication, the educator/editor and the student author so quickly and bringing the misinformation to their attention. We will also follow up from EFOF to offer a presentation, additional information and materials to the educators, staff and students.

    Reply

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