A rare condition

I had a biology teacher in high school who decided that we needed to know about rare genetic disorders and diseases. He gave us a packet with short descriptions, an encyclopedia of toe-curling, spine-tingling, nerve-twitching knowledge. Perhaps it was just a lesson to trick us apathetic teenagers into engagement, but if he was particularly morbid, we were particularly fascinated. Tissue turning into bone? Bad muscle control? We're listening. I remember distinctly learning about Parkinson's and Lou Gehrig's disease through this unusually grim set of papers.

The Mutter Museum (part of the College of Physicians) here in Philadelphia is like a Pandora's box of "medical oddities" as they like to call it. I've been there three times myself with tourists in Philly. It's interesting that half of the visitors we have here shake their heads with large, terrified eyes when we mention it as a destination, and the other half already have it on the top of their list. Colons the size of a car tire. Bodies of conjoined twins. Skulls with holes in them. It's always a curious visit. When you go there and as you wander, it eventually occurs to you, between the hernia replicas and the giant ovarian cyst, that no matter how respectably 'medical' they try to make it, the collection will always come across as really more of a Ripley's Believe it or Not, a type of dark Carnival, than a scientifically relevant showcase. At least that's the way it feels to me.

I had reason yesterday to do a bit of research on rare diseases myself (not that I have one, or anyone I know has one), a topic that seems strangely lacking in the annals of Google (isn't there some guy walled up in his basement whose hobbies include web development and unusual chronic illnesses?). The best I could come up with on the fly was the Diseases and Conditions Encyclopedia from Discovery Health. I can tell you that the rare genetic disorder, Fibrodysplasia Ossificans Progressiva (the one where tissue turns to bone) is not included. But I always knew that airline travel with children should be a true medical condition. I've suffered from that several times in my life. Clearly, and as the Mutter Museum must learn, one's definition of 'diseases and conditions' has to remain flexible.

Right now, the Internet seems vast and scary, and I'm missing my handy-dandy paper encyclopedia of rare genetic disorders. I remember it still - I kept it in a little red notebook that I'm pretty sure I tossed (with a little whimper) a few years ago. In a junkyard somewhere, the only biology lesson that has kept my interest to this day.