Monday, January 18, 2010

Join me at the American Behcet's Disease Association conference in April!

Whether you have Behcet's or someone close to you has it.... or you're treating someone who has BD, then the American Behcet's Disease Association medical conference is worth your time.

The next ABDA conference is in Orlando, FL from Friday, April 23rd through Sunday, April 25th. I've been to every conference since the mid-1990s, and I still learn new things at each one. Here are just a few examples:
  • How to treat BD-related fatigue with psychostimulants (like Provigil), and ways to get your doctor onboard with the treatment
  • Different ways to treat oral/genital ulcers and other symptoms
  • New research that's being done on BD, and available clinical trials
  • Upcoming treatments that may be approved by the FDA
  • Patient-friendly explanations of neuro-Behcet's
  • New information on filing for disability (SSI and SSDI)
  • CAM (complementary/alternative) treatments for Behcet's
  • What treatments might be scams, and what works
  • What happens at BD-related appts at the Mayo Clinic, and at the Behcet's Syndrome Center in NYC
I could go on and on, but I think you get the idea.

What happens during the conference:
  • You have ACCESS TO THE DOCTORS WHO GIVE PRESENTATIONS. You can ask questions during/after each presentation, and many doctors are willing to talk to you separately if you have specific questions about your situation. (At one conference, a neuro-ophthalmologist helped me understand why a lesion in my brain was causing certain visual symptoms).

  • Patients often volunteer info during the presentations about specific symptoms that they're experiencing, and treatments that have helped them ... and they usually get FEEDBACK FROM THE PRESENTERS on why (or why not) these treatments are good.

  • Some PRESENTERS ASK PATIENTS about certain symptoms that patients experience, to get a little background for research that they're planning to do.

  • There are SUPPORT GROUPS for both patients AND their loved ones. (Each group is separate, since they have different care issues.)

  • Some companies provide FREE SAMPLES of their products.
But most of all.....
  • You finally have a chance to MEET OTHER BD PATIENTS FACE TO FACE to talk about symptoms, treatments, family issues, and how to handle life in general when you have a serious chronic illness.
This is your chance to get a HUGE amount of Behcet's-related information in a short period of time. And if you're a physician or other health care professional, it's also an opportunity to get CME credits. Since the conferences only happen every 3 years or so, your next chance may not be until 2013 or later.

Worried about the cost?

Yes, it's expensive to pay for airfare, lodging, and conference registration, especially during this recession. Some people have been able to get good package deals through online travel sites like Expedia (etc.), where the airfare and hotel are bundled together -- you wouldn't be staying at the conference hotel, but the room could be 50% less per night. Other people have been looking for roommates to cut the price down even more (joining one of the private online BD support groups, like the one here  may help you find a roomie). I've also cut costs in the past by going the fast-food route for meals instead of going out to restaurants. And if your room has a refrig (or even an ice bucket), you can keep some things cold in your room.

Some people ask why the actual ABDA registration fee for the conference is so high -- it ranges from $300 per patient up to $375, depending on whether or not you're an ABDA member and/or if you get the early-bird fee by registering before January 31st. A caregiver traveling with a patient also gets a lower rate of $150.

Please remember, the ABDA is a small organization, with limited funds:
  • The ABDA has to pay for all of the conference-session rooms at the hotel, breakfasts for attendees, the booking of additional rooms for support group meetings and ABDA products and book sales, projection set-up for the presentations, room set-u/clean-up by hotel staff, and food/etc for breaks during the conference.
  • While the people giving presentations aren't paid for their time, all of their airfare and lodging expenses need to be covered -- that's not just an ABDA issue, it's an industry standard so that conferences are able to get qualified presenters. 
  • Printing and supplies costs: Attendees get binders with extensive handouts for each presentation, along with additional printed information. And advertising costs for the conference included the printing/mailing of conference brochures to physicians and health care providers across the country.
  • Shipping isn't cheap -- the ABDA has to ship all of its registration materials, products, etc. to the conference location... and when the conference is over, everything needs to be shipped back out again.
The conference fee is as low as the ABDA can make it. If they lose money on a conference, then no one wins -- especially BDers who need this type of information to get the best possible treatment.

Your attendance at the conference could pay off if you learn even one money-saving tip about a treatment, or about filing for disability, or how to cut costs when seeing doctors in other locations.

Going to the ABDA conference is an investment in your health.
I hope to see you there.

Joanne Zeis
More information on this three-day event is available at
Early-bird registration ends on January 31st.