The 13th International Congress on Antiphospholipid Antibodies was held in Galveston, Texas April 13-16, 2010. Hosted by Chairperson Dr. Silvia Pierangeli, and co-chair Dr. Robin Brey,MD the congress was attended by hundreds of the physicians that dedicate their work to treating and studying antiphospholipid syndrome and the antibodies themselves.

Several representatives of the American APS Association were in attendance. We rolled up our sleeves and immediately began serving by stuffing bags and moving boxes. While it may sound tiring and far from glamorous, it was quite an honor to help those that work so hard to give us relief and search for the cure. Being a part of early registration gave us an opportunity to get to know the staff of the Continuing Education Department of the University of Texas Medical Branch. They welcomed us with open arms and immediately treated us like part of the family.

As patients, we have taken pride in educating ourselves. Most of us claim to have read almost every article written on the subject of APS and know the names of the authors well. As these physicians made their way to the registration table, we were able to finally put a face with an infamous name. From the poolside welcome dinner to scientific session, we were somewhat starstruck as we met great men and women such as Dr. Graham Hughes, Dr. Michael Lockshin, Dr. Thomas Ortel, Dr. Doruk Erkan, Dr. Thomas Greco, Dr. Robin Brey, Dr. Silvia Pierangeli, and so many more. 

The friendliness of the physicians allowed us nearly unlimited access to their thoughts about APS in general and the future in the APS community. We spent time around the fire pit outside with some of the world's greatest minds discussing everything from personal topics to the patients' daily struggles. We, the patients, were welcomed as attendees of the congress and treated with the utmost respect. Our thoughts and feeling about the current standards, treatments and diagnosis procedures were heard. In social settings and the scientific settings, our worst fears of being treated as lesser individuals as patients were put to rest.

There were two patient session during the week of the congress. In the first, we watched a slide show presentation and simple explanation about the many facets of APS. That was followed by questions and answers as well as discussions. Dr. Khamashta of London showed such compassion for the patients! I was amazed at the level of patient interaction Dr. Khamashta maintained over the entire week. It was easy to see that his passion for effective treatment is a direct result of his compassion and love for the patients.

In the second patient session, we were honored to have Dr. Lockshin of New York lead. His plan was to present another slide show with basic information. However, he recognized so many of us from the scientific sessions and had interacted with many of us personally. He knew us to be well educated on the basics of APS. He altered his plan and took a vote to forgo the slide show and have open discussion time. Some of the patients were not going to be in attendance at the entire congress, so this gave them an opportunity to speak open-endedly to one of the most respected physicians in the United States. We discussed treatments (present and future), how to educate our physicians, and even a specific question about skydiving. Nothing was off limits! The session went over the scheduled time, but Dr. Lockshin gave as much time as we needed. We all ran quickly to get dressed for the Taste of Texas dinner and dancing!

The scientific sessions amazed the patients. The information they shared intrigued us. We learned firsthand how much time and effort goes into the study of the disorder that plagues us daily. While some of our personal physicians may not recognize symptoms other than blood clotting to be related to APS, the experts at the congress listed many of our daily struggles as known symptoms. It was refreshing to speak with those that truly understood. There were discussions acknowledging cognitive issues, anxiety, livedo, spontaneous fractures (specifically in the feet), fatigue, migraine, and so much more.

They hear us, patients! They are looking into all the issues they hear from us ...and others we never connected to APS ourselves.  

Meeting all the patients from various parts of the country was wonderful. It is always nice to be in the presence of those that understand. Discussions always lead from the event that led to their diagnosis to treatment. Each story was as unique as the one telling it. Though we varied in age, location, race, religion, and every other way possible, we felt a connection that cannot be felt elsewhere. Friendships were created that week that will last a lifetime.

It was no surprise that our treatments differed. We have all seen so many differences in treatment when comparing our own with other patients. The reason became clear in Galveston. When the experts gather, there are still many uncertainties. Without the evidence based studies with acceptable amounts of patients, a definitive answer on any given subject can not be attained. We can not expect our daily physicians to have all the answers when the consensus has not been reached among the experts. Many times, our frustrations become anger are focused at the physician trying to treat our symptoms and manage APS to the best of their knowledge. We have vowed to focus that frustration to work together with the physicians to get the answers we so desperately need.

Antiphospholipid Syndrome is relatively new in the medical community. There will be years more of studies... many more articles... and more International Congresses before we find our answers. However, we left the 13th International Congress with a renewed respect for the hard work these great physicians are doing on behalf of APS patients around the world.

We look forward to the 14th International Congress in Brazil! See you there!