wicked affliction

As I've said before, this damn epilepsy is a moving target, a runaway train, an elusive enemy, a slippery venomous snake. We’ve given Calvin eight different anticonvulsant drugs over the course of five years and none of them have eliminated his seizures. He’s had as many as two dozen and as few as one in any given month, but no better. If he has seizures at night we increase his evening dose of medicine and, like a bulging balloon squeezed tightly on one end, the seizures simply migrate into the daytime; increase the daytime meds and they billow back into the night. And those are just the seizures we know about.

Who knows if Calvin might be having all sorts of seizures that we don’t observe or recognize. Past electroencephalograms (EEGs) haven’t detected anything stealthy, but epilepsy is a progressive disorder that can morph and worsen over time which is why it’s hard to keep up with, much less get ahead of.

Seventy-five percent of research dollars goes into epilepsy treatments, namely drugs, leaving only a quarter of funding for finding a cure—there’s not much money in that. This means that the nearly forty percent of children and adults (over one million Americans) who have intractable epilepsy with few, if any, options for leading a seizure free life void of heinous drug side effects, developmental delays and at great risk of sudden death.

My goal in writing this blog is to increase epilepsy awareness so we can nail this sucker down and blow it off the face of the earth—this wicked affliction, this moving target.

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