For a few years now she has been trying to get the awareness out there about epilepsy. Her life was changed when her oldest son, still in high school was diagnosed. it was not an easy diagnosis and for a very long time no one was really sure what was happening. I have seen her do EVERYTHING she could to help him. She did special diets for him, she worked her butt off to help him in school and make his teachers aware that while he looks fine he is in fact having a seizure. Many times, especially in the beginning, he suffered several seizures a day.
He is on so many medications to help him that he is often tired. His memory and cognition are poor. Because of this school is really hard for him. He is socially shy. He can no longer play sports. And he cannot drive. All teenagers want to drive and because of his epilepsy he can't drive a car.
And while her son has this--epilepsy--he is still a really great kid! Despite the hardships of school for him, he is an excellent student, he is a loving son and a great big brother. He enjoys watching sports and engaging in outdoor activities and will probably be a ping pong champion one day soon. Despite his daily struggle he is a wonderful young man.
Today is Epilepsy Awareness and I wear purple to support my friend Jenn who goes through this struggle with her son Brandon. Through Jenn I have learned some disturbing facts about epilepsy:
1 in 26 people will develop epilepsy.
It can occur in anyone at any time.
There is no cure.
Up to 50,000 deaths occur annually in the U.S. from seizure related causes.
This is more than deaths from breast cancer.
The mortality rate for people with epilepsy is is two to three times higher than the general population and the risk of sudden death is twenty-four times greater.
Research for epilepsy is severely under-funded.
Federal dollars spent on research for epilepsy pale in comparison to those spent on other diseases, many of which affect fewer people than those with epilepsy.
My purple mani today is for Jenn and Brandon and the many people who are affected by this disease we know so little about and hear so little regarding.
I chose the beautiful Pahlish The Human Superpower for my purple. Those struggling with epilepsy and those caring for them have to enlist their superpowers just to survive.
Even though there is such a daily struggle with epilepsy for those who suffer with the disease as well as those who love them and support them I chose the butterfly image for my mani. Butterflies are resilient and despite their fragile appearance are strong.
In your day everyday try to remember there might be someone who's suffering you cannot see. Just because their outside shows no sign of struggle understand the struggle is real. Our best defense is always education. The more we know the more we can do. As with cancer, I hope someday soon to see a cure for epilepsy.
Beautiful mani and a great cause. <3
ReplyDeleteThis is a great cause. My best friend passed away from having a grand mal seizure in his sleep and at the time (15 years ago) we had no idea you could die from a seizure. His parents and I were in shock. He had developed it while being in the Army and he was a parachutist and hit a tree and the trauma to his head caused him to develop epilepsy. It was the hardest thing to see him go thru. We still went parachuting even after he started having seizures, because he always said, if he was gonna die young, that is how he wanted to go. Instead he was one of the first to get the Vagus Nerve Stimulation implanted in his body that used a magnet to help stop his seizures and while on a massive tour of doctor's symposiums to speak of the miracle of that wonderful new technology he got so tired that when he slept he passed from a seizure. Please make sure your friend instills in her son to live life to the fullest but to take precautions and get as much sleep as he can, it could save his life. My thoughts are with your friend and her son and family. Beautiful manicure, as always.
ReplyDeleteHi Laurie, what a touching tribute and of course, your nails are gorgeous here! <3 Back in high school (too long ago for me to mention the year...), the brother of an acquaintance of mine died after having an epileptic seizure in the shower. He fell, hit his head and was knocked unconscious, then drowned. I'm not telling that story to make everyone sad -- just to illustrate that so many of us are touched by this disease. Thanks for raising awareness.
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