Wednesday, December 3, 2008

How to spread false information about Behcet's

I get alerts every day about articles that have been posted to the internet about Behcet's disease. Most people who get these alerts are interested in finding out any information that's available on BD -- they understandably want to hear about the latest research, or any time that Behcet's is mentioned on TV or in the newspaper. So what happens when a "humor" blog posts wrong information about BD? Even I can get fooled, at least for a couple of minutes.

I just read an entry in a blog that I've never seen before. It gives a review of a "recent" episode of the popular show House. I'm a big House fan, but haven't had time to watch the show for a couple of weeks. Since House tends to have outrageous plotlines with (occasionally) public reaction to the diagnosis, I skipped through the strange-looking plot summary description and comments on the blog to look for the Behcet's reference. I was especially interested, because House has mentioned Behcet's as a possible diagnosis in three separate episodes over the years. This is what the blog's plot summary said:

" Taub, digging from the public’s common knowledge of obscure diseases, rules that the patient has Behcet's, a disease found most frequently among Middle Eastern people; characterized by psychosis and edema (inflammation of bodily tissues); and resulting from a weak immune system...

Most medications for Beh├žet’s Disease are immunosuppressants, but due to Omsler’s HIV complications, he cannot take them. Instead, he must be given a riskier, somewhat poisonous drug, Colchicine. "

How many ways is this particular description wrong? Let's see.
No, Behcet's isn't "characterized by psychosis and edema", and doesn't result from a weak immune system. And for people looking for reasons NOT to take colchicine (which I've used for years), all they'd need to hear is that it's "riskier" and "somewhat poisonous." This description might apply to large doses when given by IV, not necessarily in pill form (unless you take ridiculous amounts that would keep you in the bathroom for days).

The author of the blog tries to get around the misinformation by linking the word Behcet's to its Wikipedia entry -- not always the most accurate source of information. So where do you get accurate information? Try the American Behcet's Disease Association, at http://www.behcets.com, or the section of my website that gives basic background information on Behcet's: http://www.behcetsdisease.com/basics.htm . Or subscribe to the blog that you're reading right now, Essential Behcet's.

Once I got over my first (outraged) reaction at the description of BD, I went back and re-read the whole blog...then I was embarassed that I was taken in by a "humorous" review of a TV show. But how many people will go back and take the time to re-read the original entry, and find out that it's not true? There's no way of knowing.

The internet offers a lot of good information, if you take the time to verify the source. As they used to say every week on "Hill Street Blues" (oops, I'm dating myself :-) : Be careful out there.

1 comment:

  1. Thank you for posting this Joanne. I was speaking with some friends on a support group online, talking about BD and House, because it was a diagnosis on the show earlier this week.. They did a better job than they have in the past, but obviously people are going to look for that "cookie-cutter" image of what you should be like when you have said - illness.. I totally agree with you, and while I was happy to see it mentioned on mainstream tv, I dont think it does much for awareness, since it was so brief and uninformed.

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