Category Archives: Issue 53 – Summer 2008

When it comes to action, this group definitely puts the pedal to the metal… I am so grateful to all of you that offered me input about Dr. Grant Anhalt, getting around the Baltimore area, lodging suggestions, and most of all encouragement. When I was flying the friendly skies, all of you were with me. I could feel your love, support and cheering me on as I approached the city of Baltimore. It’s difficult enough finding a local doctor, giving him your trust and praying that his treatment will be successful. Traveling 1500 miles away is a totally different story. Hopefully,

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this story will have a happy ending. I was very impressed with Dr. Anhalt, his staff and the Johns Hopkin’s facility in Baltimore, Maryland. His knowledge, enthusiasm, and willingness to move on to Plan B made the trip all that I had hoped it would be. I am now on Cellcept and awaiting my first infusion of Rituxan on June 6th in my home town of Lake Charles, Louisiana. Dr. Anhalt is always willing to share his expertise with other physicians and responds to email in a timely manner. My local rheumatologist will be consulting with Dr. Anhalt, so I feel confident in the new treatment plan. I want to once again thank all of you for being in my corner. Our group definitely pays it forward. From welcoming new members, to answering the craziest of questions, to responding to someone in need, you are the very best.

The PEM Friends 2008 away weekend here in sunny Ashton-under-Lyne, Gtr. Manchester, will take place over three days and two nights, June 27th-29th, 2008. Happily, Janet Segall, founder of the International Pemphigus & Pemphigoid Foundation in America, is expecting to come over from California to join us.

Dave from America is also going to be with us this year. On Saturday evening, there will be a gala dinner in our house – fancy gowns ladies and smart casual for the men. There will be a whole dressed salmon delivered, vegetarians will be catered for, wine and non-alcholic drinks provided. For more information contact Carolyn at carolynblain77@hotmail.com.

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Our shining star, Carolyn Blain came to Providence, Rhode Island for Thanksgiving this past year to take part in a family event. This happy circumstance became the occasion to get together with some of our community in Rhode Island and Massachusetts to sit down for a lively lunch. So on November 24, 2007, the Saturday following the big feast day, a few of us gathered at the ZBar on Wickenden Street in Providence for yet more wonderful food, and we had the place almost all to ourselves. We took full advantage of that to make ourselves right at home. Carolyn brought many requested items from England, and even a marvelous gift or two.

Once again, I am reminded that the International Pemphigus & Pemphigoid Foundation has had many terrific outcomes. One in particular is the almost immediate links of friendship.

Around our table were, Linda and Merv McKee, Gloria and Alan Papert, Carolyn Blain, Dieter and Yvette Nachmias-Baeu, and Ellen Levine.

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Nearly all members of the IPPF Medical Advisory Board attended the autoimmune blistering disease meeting in Japan and many gave presentations on new research in pemphigus and pemphigoid. Clinical speakers from the MAB included Dr. Jean-Claude Bystryn, who spoke about rituximab experience in the USA, and Dr. Pascal Joly who spoke on his rituximab experiences in France. General discussion centered around the design of a new clinical trial of rituximab for pemphigus to be conducted in Europe that will be coordinated by Dr. Joly using different dosing schedules.

The other main discussion was about the development of accurate and clinically useful scoring systems for pemphigus and other AIBDs. Dr Michael Hertl, Germany, spoke on a scoring system proposed by the German group, termed the autoimmune bullous disease intensity score (ABSIS), one of the two present scoring systems. Dr. Victoria Werth, USA, presented on the comparison study performed with patients last August at the University of Pennsylvania, in terms of reliability and validity of two outcome instruments for pemphigus, as well as the international Pemphigus Disease Activity Index (PDAI) and the ABSIS.

Dr. Deede Murell (left) and Dr. Victoria Werth.Presentations on the first day covered the pathogenesis of pemphigus and included IPPF MAB members Dr. Luis Diaz and Dr. Sergei Grando. The chairmen of the meeting included Dr. John Stanley and Dr. Masa Amagai. Other world leaders on the causes of pemphigus presented their new work, including scientists Kathy Green (Chicago), Peter Koch (Denver), Andrew Kowalcyk (Atlanta), and Eliane Mueller (Switzerland), along with dermatologists David Rubenstein (Chapel Hill), Carlo Pincelli (Italy), Aimee Payne (Philadelphia), Yumi Aoyoma (Japan), John Zone (Salt Lake City) and Detlef Zillikens (Germany). Topics included signalling pathways, apoptosis, new animal models of blistering diseases and the role of the immune system.

The International Pemphigus Definitions group held a meeting organized by Dr. Dedee Murrell (Australia), with the help of Dr. Takashi Hashimoto (Japan), at which Dr. Werth presented the international photovalidation study that is underway to compare the two different scoring systems using photographs, so that more experts can participate.

Additional participants in these meetings included MAB members Dr. Russell Hall (Durham, NC), and Dr. Neil Korman (Cincinatti) and blistering disease experts Drs. Kim Yancey (Dallas), Robin Eady (London), Leena Bruckner-Tuderman (Germany), David Woodley (USC) and Giovanna Zambruno (Italy).

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