Wednesday, September 2, 2009

Participate in the new Behcet's disease treatment survey

Behcet's patients often ask me how they can help other BDers. Well, there's a project on my plate right now that ANY BD patient can participate in: a new survey about the treatments and medications that BD patients are currently using. Your survey responses will help to create a booklet with patients' "reviews" of approximately 30 Behcet's-related medications and treatments.

Why am I doing this?

For one thing, the "Essential Guide to Behcet's Disease" was published in 2003; while it only came out six years ago, six years can make a big difference in terms of available treatment options. For example, I wanted to see how useful/safe the newer anti-TNF drugs actually are, down in the trenches.

In addition, I often receive questions about BD treatments, through my website. For example:

  • Which drugs work well?
  • How will I feel when I take this drug?
  • Does anyone else have the side effects that I get when I take my medicine?
  • Will the newer anti-TNF medications help me?

I felt that the time was right for an updated, patient-friendly resource on Behcet's medications... within limits, of course: This new booklet is NOT meant to replace a doctor's guidance!

The online Behcet's disease treatment survey isn't meant to be a rigorously-designed piece of scientific research, either. It's a snapshot of patient experiences at one point in time, like the survey that I did in 2006 on Pregnancy in Behcet's patients in the U.S. I doubt that the results will be published in a medical journal, but that doesn't make the collected information any less valuable for patients.

If you'd like to find out more about this survey (and hopefully participate in it, too) it's available until October 1 at this location:

Hope to see your survey answers soon!
All the best,
Joanne Zeis