Friday, May 28, 2004

How's this for a truly bizarre coincidence?

For the past two years, I've shared an office with five colleagues. We use it to meet with students and do some administrative stuff and things like that. Yesterday I bumped into a guy who was one of my officemates last year. Let's call him Fred. I remembered that Fred had lost his hearing in one ear last year, and since I'm interested in hearing stuff these days, I asked him what had happened.

He said that he'd had a weird autoimmune inner-ear thing. First he got vertigo, then he'd gone deaf in one ear.

"That's really strange," I said, "because I'm having a weird autoimmune inner-ear thing. I haven't lost any hearing, but I have vertigo."

"Do you also have iritis?" he asked.

At which point, my jaw dropped.

Now, I don't want to make too much of this. Both Fred and I had indicators of autoimmune problems long before we started sharing an office. Fred has had iritis periodically since he was a kid. But it's a really weird coincidence. Autoimmune inner-ear disease is not at all common. My rheumatologist has seen two cases in twenty years of practice. Autoimmune inner-ear disease accompanied by iritis is really, really rare. It is very strange that two people in the same department, sharing the same office, have this particular, very rare constellation of symptoms.

I can't decide whether I should tell my rheumatologist about this. Is it possible that there's something in the office that could trigger inner-ear problems in people who are already predisposed to have autoimmune issues? I know that sounds nutty.

One more medical thing before I shut up and try to think about something else. It's been bugging me recently that there isn't a medical specialty in autoimmune disorders. It's been bugging me personally, because I'm having a really hard time getting my various doctors to coordinate, and it would be nice if there were one person who was really in charge. But it also strikes me as politically sketchy. All autoimmune diseases fall to rheumatologists, because rheumatologists deal with joints, and arthritis is the most common autoimmune disease. But my condition has nothing to do with joints, and I'm still seeing a rheumatologist. It's as if we sent everyone with cancer to a lung specialist because lung cancer is the most common form of cancer. That would never in a million years happen. And I just don't believe that it's a coincidence that this neglected class of disorder is one that primarily strikes women and disproportionately strikes women of color. Call me cynical.

You probably know far more about autoimmune diseases than I do, but I would have thought they'd be more genetic than triggered by environments, wouldn't they? I have a couple of things I think might be triggers for iritis attacks, like extreme stress, extreme temperature change and long airplane trips, but I'm pretty sure I only get it because of my crappy genes (everyone in my family has an autoimmune disease except my brother).

But yeah, weird coincidence about your office mate. I once had a classmate who had a rare, rare bone disease that only three people in the world were known to have, and one of them was also in our department. As much as I hate the thought of anyone getting anything as nasty as iritis, on the few occasions I've met people who do (having a rare condition is crappy, huh?), it's kind of a relief to be able to talk about symptoms and flareups and other iritis in-crowd stuff. Maybe you can have a support group?
Yeah, it's definitely genetic, and this guy has that evil autoimmune gene thingy. But the road-trip specialist said that there also seems to be some triggering mechanism: a significant proportion of people who have my condition have an upper respertory infection a month or so before they have their first symptoms. So they think it's mostly genetic, but people with a genetic predisposition might need a trigger to actually get the disease.

Weird, isn't it?

Anyway, we did have fun talking about symptoms. We're getting together on Tuesday to talk about it some more. He's the first person I've met who actually had the scary eye injection.

I think we should have a support group where we eat chocolate and whine about our eyeballs. Although, truthfully, I'm not sure that would be different from my ordinary life right now.
My cousin, who has a different, rarer form of uveitis from mine (everyone in the family has some kind of auto-immune fun) has had the evil eye injection too. She said it was bearable, or at least better than being on prednisone for months, but she is a scientist and pretty no-nonsense about these things, whereas I'm a gal with a great deal of nonsense.

How did your friend find it? I'm afraid the very thought of an eye injection makes me slightly sulky and tearful.

Mmm, chocolate... *drool*
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