overhaul / undertow

Sunday, November 03, 2002

...so this means...absolutely nothing, then!

I found this article at MSN News or something. I hate studies like this--isn't there some joke about the Institute for the Research of Incredibly Obvious Things?
I certainly hope my tax dollars didn't fund this.
My issue is not with the actual study, but with the way the results are reported. The margin of error in many studies of this sort is pretty damn big.

Genetic Link to Lupus Identified:
Flawed Gene May Put Some People at Risk
By Jennifer Warner
Reviewed By Michael Smith, MD
WebMD Medical News

Oct. 28, 2002 -- People with a certain genetic flaw may be more likely than others to develop lupus. Although researchers have suspected a genetic link to lupus existed, a new study has pinpointed one gene.

Researchers studied more than 2,500 people with lupus and found that people with the disease were more than two to three times as likely to have a particular variant of a gene called PDCD1.

Lupus is a disease of the immune system that causes fatigue, joint pain and swelling, and sensitivity to sunlight. More serious cases may also cause damage to the kidneys, heart, and nervous system.

Estimates vary, but lupus is thought to affect about one in every 2,000 people in Western countries and most commonly strikes young women between the ages of 15 and 40.

However, the abnormal gene is associated with only some people with lupus -- 12% of European and 7% of Mexican lupus patients have this lupus gene. Researchers found this gene in only 2% to 5% of people without the disease.

Study researcher Marta Alaracón-Riquelme of the University of Uppsala in Sweden says this gene is already known to affect the ability of the immune system to recognize its own cells from others, and any alteration of the gene might contribute to the exaggerated immune response that is found in lupus.


What the fuck? 12% of patients, tops, may have this gene? The difference between people without lupus who have the gene and people with lupus who have this gene could be as close as two percentage points? What the fuck does this tell me? "Well, miss, you appear to have this awful disease, and there's also this wacky, like, twelve percent chance you have this weirdo gene, too! Isn't that special?!?" I have a better fucking chance of being born with three wisdom teeth or longer second toes or hanging earlobes than I do of having this stupid gene. (I actually do have only three wisdom teeth--wack. I hear it means you're more genetically evolved. Rah! Finally, proof!)

This study bugs me more than usual 'cos I was almost diagnosed as having lupus. For six months when I was about 19 or 20 they didn't know if I had rheumatoid arthritis or lupus--both autoimmune diseases that strike primarily young women--and for those six months myself, my family, and my friends hung swaying in this awful airless space, feeling a noose tightening around my neck, terrified.

After about seven, eight months they decided I had RA--I guess it's a slippery slope between the two illnesses--and I have been enormously lucky that it has been in remission for the better part of the last six years. Both illnesses involve your body mistaking itself for an allergen, in a way, and attacking itself. Lucky for me, it's just my joints, and martial arts and yoga have helped me stay strong and not have any real damage yet--yay. People with lupus get it everywhere, in all their organs. I am so so so so fucking thankful.

The two or three times it's popped out of remission sucked. It usually hits me in my knees--one time I woke up in the middle of the night to find it had gone full-blown, my knees swelling up to the size and appearance of canned hams--yuk. And in the feet, which really blows, 'cos, well, you need those, you know? There were a few months when I couldn't walk around UCLA (I was in school at the time) without hurting with every step. I gritted my teeth and refused to get a handicapped placard, even though I could barely climb stairs (pulled myself up with my hands) or walk; getting that little tag on your car might be a bitchen' coup for someone who hates parking lots, but for someone like me who's both a stubborn bastard and genuinely ill, it's an admission of something I wasn't ready to admit. I would walk on the grass whenever I could--it hurt less. I think I singlehandedly raised the stock value of athletic-insole manufacturers. Yay for Dr. Scholl's.

But all in all, except for those few periods, it hasn't been a problem--just a nagging worry in the back of my head, a reminder to keep moving keep moving keep moving every fucking minute--'cos quite seriously, I have no idea when I might wake up another night and find myself blown up and achy like a sickly balloon. As for now, I am the queen of flexibility, and I can take the stairs two at a time. I learned to use a Chinese sword in kung fu and I can do this neato stuff with it, like the women in Crouching Tiger, Hidden Dragon. I am pretty darn healthy and able. I am learning to eat fire at Wednesday night workshops, with a friend of mine who does fire-spinning.

There is a book by Tom Robbins called Jitterbug Perfume. It begins in the dark ages, and is the story of a man who lives for centuries. He is a king, but flees his homeland when he realizes that he isn't bound by fate--he can do anything he pleases. On his journey he meets a wise man, who whispers a secret to him, laughing the whole while--"The world is round!"

"Round? You're kidding!" says the king.

The sage giggles and says he is very very serious.

And so the king goes off, walking around the whole damn world. And every time he thinks he can't do something, or can't keep going, he just sings to himself: "The world is round, round, round!"

He walks around the world until 1990 or so, when the rest of the story unfolds.

As for me, I just keep reminding myself, the world is round, and I can walk around the whole damn thing.


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