European Vasculitis Foundation
Symposium a Success

By Cindy Smoot
November 2007

The first European Vasculitis Foundation Symposium was held September 14-15 in Cambridge, England at Queens College. The Symposium hosted the some of the most respected physicians for vasculitis and related specialties from all over Europe. Dr. David Jayne, who was instrumental in planning the Symposium and is also on the CSSA Medical Advisory Board, did the welcome and closing presentations, as well as the session on CSS. Dr. Gross from Germany, who is also on the CSSA Medical Advisory Board, did the other initial presentation about vasculitis in general. Throughout the Symposium CSS was well represented in all the sessions, and the only disease to have its own session.

It was encouraging to see how much interest in CSS is being generated among the top doctors specializing in vasculitis in Europe. One of the presentations showed a breakdown of patient populations for each specific disease. While all vasculitic diseases are considered rare, CSS had some of the lower numbers of patients in the study among all the diseases listed, demonstrating that CSS is truly one of the rarest of rare diseases. For such a rare disease we are fortunate indeed to capture the interest of these doctors, and to have the representation we have at events like this.

The 19 different sessions ranged the gamut of issues that affect those with CSS from a caregivers group, to new treatments, to the involvement of several specific organs. For those that attended there was so much to learn and come away with, and they were able to become more informed and educated about their disease and the problems they deal with as a result.

As mentioned previously Dr. Jayne did the presentation on CSS. He explained in detail just exactly what CSS is, the stages of CSS, the symptoms, and the mechanisms behind CSS. He helped explain some of the controversy with Montelukast and the other anti-leukotriennes such as Singulair that have been associated with CSS. He also spoke about the more common organs involved such as the lung, heart, and gut, and how CSS affects them. Dr. Jayne wrapped up the session discussing prognosis and treatment. He went into the “standard” treatment of steroids and the other immunosuppressants such as Cytoxan, Methotrexate, and Imuran which is the same standard treatment patients in the US receive. Lastly he talked about some alternative drugs for non responsive cases such as IVIG, Interferon, Cyclosporin as well as newer drugs like Campath and Rituximab. The session was well attended, and so many of the fellow CSS’ers that have known each other from the support group were able to finally meet each other.

It was a wonderful opportunity for those patients with the all different vasculitic diseases to finally be able to meet and get to know others that share the same struggles. So many of our stories have such similarities. Until this Symposium there had been no other organized event for patients to get to meet other patients. Whether a person had CSS, Wegener’s, or PAN they all had a shared a bond and quickly hit it off with one another. It was really a huge success, and those of us who were fortunate enough to be able to attend came away with much more than we anticipated.

To view some of the Power Point presentations from this Symposium, visit the Vasculitis Foundation website