Why Me?

This isn't another rant about how come I got dealt a crappy pancreas. It's about something else.

Last year I went to the skin doctor who did my melanoma surgeries. He found another "precancerous" lesion and removed it. So I asked him whether the Januvia I'd been taking might be harmful to me because of the way it suppressed DPP-4 which is known to be implicated in the process that keeps melanocytes from going metatastic.

This guy is an MD/PhD and pretty sharp, and, incidentally, he saved my life after the other local skin doctor told me the big brown patch on my chest was nothing to worry about. So I figured maybe he'd have some ideas.

Instead he said, "Wait a moment," and left me in the cubicle in the skimpy johnnie for about fifteen minutes. Then he came back and told me that all he could find online that had any information on the subject was on one web site. With a sinking feeling, I asked him if it was on phlaunt.com and sure enough, it turned out to be mine.

I had something similar happen last week. I read an article in a newsletter published for practicing endocrinologists written by some endos who have been diagnosing patients with MODY here in the U.S.

Since the only doctors I'd previous found who had even heard of MODY were treating it in the UK, I quickly fired off a letter in which I mentioned my site and added that I hear from quite a few people diagnosed with MODY who are frustrated that their doctors only give them a diagnosis and no other information about what to expect. I also asked a couple questions that grew out of both my own experience and that of the people around the world who email me.

The author wrote back that he had checked out my web site and loved it and was going to refer his MODY patients to it. But no, he didn't know anything more about any of the questions I'd asked. He hoped that the information exchange my site makes possible would add to our knowledge about MODY.

Tag. I'm it.

The media are full of articles extolling how web-based patient information is transforming the treatment of chronic diseases. The New York Times had a big article on this topic just yesterday. But what none of these articles points out is that the patient movement is fueled by dozens if not hundreds of people like me who put in literally thousands of hours answering emails, posting on bulletin boards, and participating in the blogsphere for free. Doctors, last time I checked, bill $500 an hour to give their advice, even though, as may people with diabetes have learned, that advice is often dead wrong.

Don't get me wrong. I'm happy I can help people. And I'm happy that I'm hearing from an increasing number of MDs who tell me that the information on my site is extremely helpful to their patients. But I'm not happy about the system where doctors can answer any request for information about a serious condition with a shrug, a referral to my web site and leave it at that. And when I have to pay them to find out that I know more than they do about something very important to my health.