Sunday, December 21, 2008

Blogging about Behcet's

Behcet's is an isolating illness for many people. Online support groups can help people feel less alone, and formal organizations (like the American Behcet's Disease Association, Behcet's Canada, and the Behcet's Syndrome Society in the U.K.) are invaluable sources of information.

There's nothing quite like blogging about Behcet's, though. It's an opportunity to share your story with other people. It lets you raise Behcet's awareness, even if you don't think anyone else is reading....because, guess what? I'm not the only person who searches online blogs for people who write about BD. You may never hear from your blog's readers, but trust me, they're out there -- and some of them are desperate for information.

If you decide to start a Behcet's-related blog, or even if you have one now, be responsible about what you share. For example:

* Some of your newer readers may have just been diagnosed with Behcet's. Remember what that was like? Most newly-diagnosed people are frightened and upset, and there are already a lot of Behcet's-related websites that will scare the living daylights out of them. Share anything you want or need to about your own situation, but remember that every BD patient is different. Your experiences may be much more severe (or much more mild) than the experiences of your readers.

* If you quote from medical journal articles or books about Behcet's, be sure to reference the original source. Your readers (or their doctors) may want to locate the source that you're quoting from.

*Keep those copyright laws in mind! It's ok to give short quotes from already-published material (with the proper reference), but don't post articles or chapters without getting permission in advance from the author(s) or journal.

* If you've had a really bad experience with a doctor, write whatever you like, but think twice before publicly posting that doctor's name in your blog. It's better to report the doctor(s) to your state's medical board than risk legal problems by posting names. If you've had a great experience with a doctor, though, let the world know! There are too few doctors who will go the extra mile for BD patients. Give them the kudos they deserve.

Here are a few blogs that occasionally (or often) post about Behcet's-related issues and experiences.

And finally, there's the "Behcet's Corner" blog from Sanya Richards. She's recently become a spokesperson for the ABDA, following her 2008 Olympic gold medal performance!

I may not have time to post again this week -- so Happy Holidays to all! Maybe you can make a New Year's resolution to start a BD blog yourself. If you do, let me know. I'll update my list of blog URLs in a few weeks.
All the best,