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The challenges of CEFS
Two weeks before my ninth birthday I was diagnosed with Chronic Explosive Flatulence Syndrome. Frankly, the diagnosis was a relief. I’d always known there was something not normal about my personal plumbing. When I tried lighting farts with my 3rd grade friends, Stevie’s and Jim’s were like these little blue jets that darted from their underpants, provoking gales of laughter. Mine was like the firing of a Saturn booster. It lit the curtains on fire and we had to call 911.
A CEFS attack starts with a deep growling, like hunger noises but from lower down and ten times as loud. After a few ominous seconds there is a short piercing whistle, followed by the actual expulsion, which produces a shock wave you can feel and sounds like a kid’s first attempt to blow a trombone. Then the eerie silence and…the smell. Think of the worst Silent-but-Deadly you’ve ever experienced. That’s nothing.
Although CEFS has now been accorded the status of a “syndrome,” it is often misdiagnosed as either a plate of bad seafood or a bid for attention from the Class Clown. But CEFS is no joke. Rather, it is humiliating, stigmatizing and expensive. My family spends more than $12,000 a year on air freshener alone.
There has been depressingly little research into CEFS, but we do know the disease runs in families. My own granddad died in a mining explosion that was almost certainly of his own making, back before they understood what a lethal combination smoking and CEFS could be. But the gene for explosive flatulence has yet to be isolated so there is no test. And as of this writing, there is no cure.
However, I hope to have a hand in finding one. On top of my tireless efforts as a national spokesperson for CEFS, I hope to pursue research into the biochemical mechanism that underlies these devastating blasts. The amazingly excellent biochem department at Tufts is crucial to my future humanitarian efforts.
While CEFS is part of who I am, I tell myself every day that I am more than my CEFS. And I refuse to allow CEFS to make me less than I can be.
Rather than humiliating, I will make CEFS an opportunity to build my inner strength.
Rather than stigmatizing, I will see CEFS as a way in which I’m special.
Rather than incredibly smelly…OK, I’m still working on that one.
A CEFS attack starts with a deep growling, like hunger noises but from lower down and ten times as loud. After a few ominous seconds there is a short piercing whistle, followed by the actual expulsion, which produces a shock wave you can feel and sounds like a kid’s first attempt to blow a trombone. Then the eerie silence and…the smell. Think of the worst Silent-but-Deadly you’ve ever experienced. That’s nothing.
Although CEFS has now been accorded the status of a “syndrome,” it is often misdiagnosed as either a plate of bad seafood or a bid for attention from the Class Clown. But CEFS is no joke. Rather, it is humiliating, stigmatizing and expensive. My family spends more than $12,000 a year on air freshener alone.
There has been depressingly little research into CEFS, but we do know the disease runs in families. My own granddad died in a mining explosion that was almost certainly of his own making, back before they understood what a lethal combination smoking and CEFS could be. But the gene for explosive flatulence has yet to be isolated so there is no test. And as of this writing, there is no cure.
However, I hope to have a hand in finding one. On top of my tireless efforts as a national spokesperson for CEFS, I hope to pursue research into the biochemical mechanism that underlies these devastating blasts. The amazingly excellent biochem department at Tufts is crucial to my future humanitarian efforts.
While CEFS is part of who I am, I tell myself every day that I am more than my CEFS. And I refuse to allow CEFS to make me less than I can be.
Rather than humiliating, I will make CEFS an opportunity to build my inner strength.
Rather than stigmatizing, I will see CEFS as a way in which I’m special.
Rather than incredibly smelly…OK, I’m still working on that one.
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Sounds like a blast. Smells like one too. Ahhhhhhhhh........
posted August 31, 2009 06:41pm
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