November is Epilepsy Awareness Month. Why does it matter to me? Well, it hits a little close to home, my daughter has epilepsy.
She started having seizures when she was 6 months old, but her epilepsy wasn't diagnosed until she was 23. That's a long and involved story and not the point of this post. But I will say this -- if you have any concerns about your childs health or development DO NOT LET
ANYONE TELL YOU IT'S NOTHING TO WORRY ABOUT. DON'T LET THEM MAKE YOU FEEL LIKE AN OVER-PROTECTIVE PARENT WITH ISSUES. You know your child, if you believe there is something to be concerned about, don't let the "experts" tell you you don't know anything.
Now, back to epilepsy and how one young woman learned to live with grace and style in spite of her diagnosi
s. Or maybe because of it.
When Cinnamon was diagnosed she took the news pretty well, considering. While she got upset when she learned that she would have to give up her drivers license for 6 months, longer if she had any seizures during that time, her Dad & I were more concerned with how she would live with epilepsy. We didn't know much about it, so that made it even scarier.
I was surprised by some of the things I learned.
- There are over 40 different types of epilepsy
- It is believed to sometimes be hereditary
- People with epilepsy have a higher rate of depression
- Suicide is 10 times as likely for epileptics as it is for non-epileptics
Cinnamon is aware of the facts, she's a veritable encyclopedia of facts about epilepsy, but she tends to pay little mind to the ones that would limit her living the life she chooses. She does not take unnecessary risks, but she also refuses to use her epilepsy as a crutch to keep her from life. And she has never felt any shame about having epilepsy. She doesn't exactly wear it on her sleeve, but she is very open about it and welcomes questions about it. I've heard people say to her that they would never tell anyone if they had epilepsy. She LOVES those comments -- they give her a chance to really educate someone about epilepsy.
She's lost some friends who were afraid of her having a seizure while they were with her, missed out on a couple of jobs and had family members say some pretty obnoxious things. But she's fairly philosophical about it. As she likes to say, "It's much harder on them to live with that kind of attitude than it is for me to live with epilepsy." She just moves on. That's a lesson we could all learn. 
If you were to ask her what she wishes more people knew about epilepsy, I can quote her, because she says it often,
"I wish they understood that it's not a mental defect. That you don't need to be afraid of being around someone with epilepsy. And EVERYONE should learn what to do if they see someone having a seizure."
So here is the list she keeps --
When providing seizure first aid for generalized tonic clonic (grand mal) seizures, these are the key things to remember:
- Keep calm and reassure other people who may be nearby.
- Don't hold the person down or try to stop his movements.
- Time the seizure with your watch.
- Clear the area around the person of anything hard or sharp.
- Loosen ties or anything around the neck that may make breathing difficult.
- Put something flat and soft, like a folded jacket, under the head.
- Turn him or her gently onto one side. This will help keep the airway clear.
- Do not try to force the mouth open with any hard implement or with fingers. A person having a seizure CANNOT swallow his tongue. Efforts to hold the tongue down can injure teeth or jaw.
- Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
- Stay with the person until the seizure ends naturally.
- Be friendly and reassuring as consciousness returns.
- Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.
I hope that you will visit the Epilepsy Foundation website and learn more about epilepsy.
There are close to 2.5 million people in America living with Epilepsy. It's a shame that so few know the facts about it. Cinnamon is doing her part to educate others, it seems only right that I do the same. Please, get the facts. There is no excuse for any of us to live in the dark when it comes to epilepsy.
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