Tri and Stop Myths about Epilepsy (M.E.) - raising awareness to stop the Myths about Epilepsy.
I wanted to do something a little special on my journey to my first Full distance Triathlon (2.4 mile swim, 112 mile bike, 26.2 mile run). I thought about the causes that are important to me. Then I realized there is a cause that I'd forgotten all about when I really shouldn't have.
I was diagnosed with epilepsy as a freshman in high school. Coming home from X-country practice, I would take a nap before dinner. Upon waking for dinner I started to experience "shakes" or petit-mal seizures. The most entertaining was during dinner when I "threw" peas that had been on my fork across the room. My mom, thankfully, spoke to a doctor friend who recommended we see a neurologist as quickly as possible.
The results of my examination came quickly and I was shocked to hear "you have epilepsy" and being a teenager my first thoughts immediately went to
"how do I keep this from people"
The idea of "I have epilepsy" was something I was ashamed of and I was worried about what people would think. Considering that I continued to run x-country, swim on the swim team, play tennis, etc. (the activities that were the triggers for my seizures) I really should have let some people know what to do in case I did have a seizure! Note: I was extremely lucky in that my seizures were completely controlled on my medication.
So now is my chance to do something to raise awareness to folks that people with epilepsy can do lots of things (dependent of course on the severity of their condition) and dispel many of the myths surrounding the condition.
Facts about Epilepsy
From the Epilepsy Foundation website:
Approximately 3 million Americans have epilepsy, and over 200,000 new cases are diagnosed in the United States each year.
One in 10 people will have a seizure at some point in their lives.
Epilepsy doesn’t discriminate. It affects children and adults, men and women, and people of all races, religions, ethnic backgrounds, and social classes. While epilepsy is most often diagnosed either in childhood or after the age of 65, it can occur at any age.
Instead of listing myths, here are some FACTS about Epilepsy: (taken from: http://www.epilepsy.com/101/ep101_facts)
1. People with epilepsy are seldom brain-damaged.
2. People with epilepsy are not usually cognitively challenged.
3. People with epilepsy are not violent or crazy.
4. People with epilepsy are not mentally ill.
5. Seizures do not cause brain damage.
6. Epilepsy is not necessarily inherited.
7. Epilepsy is not a life-long disorder.
8. Epilepsy is not a curse.
9. Epilepsy should not be a barrier to success.
What I'm Doing About It
No one ever told me to stop running, no one ever told me it was dangerous for me to go swimming, because it wasn't. Luckily my seizures were brought under control with my first drug protocol. And 10 years later, as a newlywed and hopeful future parent, I was retested and found to be seizure free! Now I'm a mom of two and I've been seizure free for the last 15 years.
This summer I'm building on my life long love of sports and attempting a goal I've wanted to reach since I was 10 years old.
On September 12, 2010 I will compete in the FullRev Cedar Point race. I will attempt to Swim 2.4 miles, Bike 112 miles and Run 26.2 miles on the same day; a total of 140.6 miles. A feat that has been said to be the "toughest one day race" in the world. In the meantime I will be talking to folks about epilepsy and raising money to support research to find a cure.
I will race in honor of all of the folks who are not as lucky as I was; folks who's daily lives are interrupted by seizures and prevent them from reaching the goals they have for themselves.
Please help me reach my goal of raising $1406.00. Help folks who's seizures cannot be controlled by medication realize their full potential, by donating to the Epilepsy Foundation via the Tri and Stop M.E. fund! Donate here: http://giving.epilepsyfoundation.org/goto/triandstopme
Thank you!
I wanted to do something a little special on my journey to my first Full distance Triathlon (2.4 mile swim, 112 mile bike, 26.2 mile run). I thought about the causes that are important to me. Then I realized there is a cause that I'd forgotten all about when I really shouldn't have.
I was diagnosed with epilepsy as a freshman in high school. Coming home from X-country practice, I would take a nap before dinner. Upon waking for dinner I started to experience "shakes" or petit-mal seizures. The most entertaining was during dinner when I "threw" peas that had been on my fork across the room. My mom, thankfully, spoke to a doctor friend who recommended we see a neurologist as quickly as possible.
The results of my examination came quickly and I was shocked to hear "you have epilepsy" and being a teenager my first thoughts immediately went to
"how do I keep this from people"
The idea of "I have epilepsy" was something I was ashamed of and I was worried about what people would think. Considering that I continued to run x-country, swim on the swim team, play tennis, etc. (the activities that were the triggers for my seizures) I really should have let some people know what to do in case I did have a seizure! Note: I was extremely lucky in that my seizures were completely controlled on my medication.
So now is my chance to do something to raise awareness to folks that people with epilepsy can do lots of things (dependent of course on the severity of their condition) and dispel many of the myths surrounding the condition.
Facts about Epilepsy
From the Epilepsy Foundation website:
Approximately 3 million Americans have epilepsy, and over 200,000 new cases are diagnosed in the United States each year.
One in 10 people will have a seizure at some point in their lives.
Epilepsy doesn’t discriminate. It affects children and adults, men and women, and people of all races, religions, ethnic backgrounds, and social classes. While epilepsy is most often diagnosed either in childhood or after the age of 65, it can occur at any age.
Instead of listing myths, here are some FACTS about Epilepsy: (taken from: http://www.epilepsy.com/101/ep101_facts)
1. People with epilepsy are seldom brain-damaged.
2. People with epilepsy are not usually cognitively challenged.
3. People with epilepsy are not violent or crazy.
4. People with epilepsy are not mentally ill.
5. Seizures do not cause brain damage.
6. Epilepsy is not necessarily inherited.
7. Epilepsy is not a life-long disorder.
8. Epilepsy is not a curse.
9. Epilepsy should not be a barrier to success.
What I'm Doing About It
No one ever told me to stop running, no one ever told me it was dangerous for me to go swimming, because it wasn't. Luckily my seizures were brought under control with my first drug protocol. And 10 years later, as a newlywed and hopeful future parent, I was retested and found to be seizure free! Now I'm a mom of two and I've been seizure free for the last 15 years.
This summer I'm building on my life long love of sports and attempting a goal I've wanted to reach since I was 10 years old.
On September 12, 2010 I will compete in the FullRev Cedar Point race. I will attempt to Swim 2.4 miles, Bike 112 miles and Run 26.2 miles on the same day; a total of 140.6 miles. A feat that has been said to be the "toughest one day race" in the world. In the meantime I will be talking to folks about epilepsy and raising money to support research to find a cure.
I will race in honor of all of the folks who are not as lucky as I was; folks who's daily lives are interrupted by seizures and prevent them from reaching the goals they have for themselves.
Please help me reach my goal of raising $1406.00. Help folks who's seizures cannot be controlled by medication realize their full potential, by donating to the Epilepsy Foundation via the Tri and Stop M.E. fund! Donate here: http://giving.epilepsyfoundation.org/goto/triandstopme
Thank you!
Labels:
epilepsy,
fund raising
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Wow, Jill! I had know idea about your epilepsy. It really goes to show how it could be effecting just about anyone - the person next to you, maybe - and you'd never know it unless they had a seizure.
ReplyDeleteI love that you put this out there, and are using your journey to Sandusky as a way to raise awareness. As the workouts get longer and looooonger, you can think to this cause as another source of motivation.
No idea here either! Scary stuff, but so glad you are now seizure free. What a relief.
ReplyDeleteI had seizures after E's birth, scariest experience of my life and it made me really feel for people who have to deal with them daily. Strong people!
Hope training is going well! Good luck, IronWoman!
Thanks guys! Yeah, it was scary back then, never knowing if "pushing hard" was going to mean pushing over the edge. Kate, I am with you, especially for the parents of the kids; the constant worry that the next moment will be lost.
ReplyDeleteIt's tricky, because you want people to know it's nothing to be scared of (and I'm going to post some first aid info here shortly); but at the same time, for the folks that are living with it, it IS a daily worry.
Thanks again for your support ladies! :-)