Support Comes from All Around

It was a pleasure to attend this year’s annual IPPF meeting in Los Angeles.

These meetings have particular meaning to me since it was a little over twelve years ago that I suggested to Janet Segall, the founder of the IPPF, that she should think about organizing an annual patient/doctor get-together. It was my thought that those of us living in North America would benefit greatly from exchanging information with other patients and listening to leading doctors who could help us deal with these challenging diseases.
I have very fond memories of the first meeting held in Chicago. As a Director of the IPPF, I am very pleased and proud of how far the organization has come in 12 lata.

The Patient/Doctor Meeting was a wonderful event. The weekend’s events were kicked off on Friday night with a newcomer reception and orientation. For those individuals who were recently diagnosed, the first few months are a particularly unsettling time. I am sure that many of the patients and their families benefitted from the opportunity to chat informally with IPPF board members and other patients who have had the disease for some time. There were folks there from all over the United States and from as far away as Chile and Canada (me). I think everyone benefitted from an opportunity to exchange information in a relaxed and pleasant environment.

The Saturday session was well attended with over 100 pacjentów, spouses and care-givers. Dr. Grant Anhalt, one of the world’s leading authorities on Pemphigus and Pemphigoid, who spoke at the original Annual Meeting in Chicago, (and I believe all of the meetings since then,) began the day with an excellent Introduction to Pemphigus. It was gratifying to see the evolution in knowledge and treatments. He was followed by a number of other leading doctors (Grando, Haley, Woodley, i Sinha to name a few) and health care specialists who spoke effectively on the various trials under way and the results being achieved with IVIG and Rituximab, two treatments that were not around when I was first diagnosed with pemphigus. While prednisone, Imuran and CellCept are still the first line treatments, there are now a range of new options that are being used and evaluated to treat these diseases.

The afternoon session contained an array of interesting speakers that discussed everything from the business of medicine, a rather sobering but necessary presentation to Disease with Laughter, i Oral Medicine. The day was filled with excellent presentations that addressed pemphigus and pemphigoid from a variety of perspectives. I am sure that all of the attendees benefitted greatly from receiving these detailed briefings.

The day concluded with two very important undertakings, a silent auction and a. The silent auction was remarkable. Sitting on a rectangular table, about 50 feet long by 20 feet wide, were a large number of gifts donated by various companies in the Los Angeles area. These items ranged from dinners at some of the city’s best restaurants to a day at a spa. During the course of the day, meeting attendees bid on these items. The IPPF raised a significant amount of money from the generosity of those individuals who purchased raffle tickets and donated items.

Another feature that made this event unique was the four booths at the back of the room. In each booth there were representatives from organizations who were there to discuss wound care and patient support. It was great to have AxelaCare, Centric Health Resources, Crescent Healthcare i National Rehab in attendance. Thank you for coming and for supporting the IPPF. It was greatly appreciated by all

The day concluded with a gala dinner. In addition to the great food and company, there was a moment that made this day very special. Marv Rosenberg, who spoke earlier in the day on maintaining a positive attitude, led the group in singing the famous disco song, YMCA, but with words that tell the Pemphigus and Prednisone story (see the lyrics on page 11). This was truly memorable and touching. A great deal of thanks goes to Marv for this original and very heart-warming entertainment. A great time was had by all.

The meeting wrapped up on Sunday morning with a Patient Support meeting. Thank you most go to Molly, Janet i Will who helped organize this amazing event. I know it was of great value to everyone who came. I look forward to seeing the taped highlights of this memorable couple of days as soon as they are available.

Napisano w Issue 57 - Summer 2009
The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.