I was diagnosed with adult-onset epilepsy when I
was 23. I might have had my first seizure when I totaled my car at age 21,
but no one saw the wreck and I had so many other injuries that no one thought
to give me an EEG to see if I had seizures. The other possibility is that I
developed seizures after the accident because of my skull fracture. We’ll never
know.
At 23 I had another seizure behind the wheel and
this time someone saw that I was having a seizure. It was then that I had gamut of tests and later in the year they told me it was epilepsy. Read the full story here and
here (and various musings here and here). Since then I’ve taken seizure medication and have had seizures all over
the place, but I usually only average around two a year. Epilepsy is loosely
defined as episodic abnormal electrical activity in the brain that happens
numerous times and can often be controlled but not cured by medication. No one knows why these electrical misfires happen, though there are things that trigger them for some people. It’s
very much still a medical mystery.
Compared to many people, I have it so easy. After
completing the Walk for Epilepsy last year I met more people who have seizures much
more frequently than I do and who cannot find a medication that does not give
them horrible side effects. At the walk, people with epilepsy wore purple
shirts. The saddest thing to me was seeing strollers draped with purple shirts.
I can’t imagine being the parent of a little child who has seizures as often as
several every hour, which is true for a lot of childhood epilepsy patients.
While it usually doesn’t have the social stigma that it used to, epilepsy still
has social and of course medical challenges that people face.
I certainly don’t think of myself as a victim and I don’t
want others to either. In fact, I think having epilepsy has made me a better
and stronger person. It has also made me aware of other much more debilitating
and devastating cases that make me want to do a little something to help. (3 million people in the US have seizure disorders) Thank you so much to those who generously donated money last year and those who have already this year. I will be thinking of you as I walk! If you haven't yet, please
consider donating in my name or walking with the boys and me at the end of
March. In a nutshell, here’s what your donation would go toward:
Helping support innovative research toward
treatment options such as intravenous anti-epilepsy medication, specifically
for infants with seizures
Helping support advocacy efforts that make sure
people with epilepsy are not discriminated against, especially through health
care coverage (My medication without insurance costs $300 a month)
Helping provide programs to educate first
responders to identify seizures from behaviors that could be a result of drugs
or alcohol, and to know how to help
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