Most people first come to the Annual Meeting when they are in the worst throes or the early stages of these diseases, dans la douleur, angry, alone and uncertain. Most leave having met many, many folks who are in “remission,” that magical word, (see inspiring stories of remission at http://www.pemphinremission.com), who are filled with laughter, joy, passion, gratitude and yes, a “moon-face” or two. How can two days in a hotel ballroom alter the lives of so many so fast, over and over again each year?
For people to move through this transition from newly diagnosed to capable advocates for their own health and well-being they need quality information, a sense of hope, and the support of others who understand where they are, and where they can get to.
The quality information comes from the leading doctors in P/P both in the lab and in the office, or what we call “bench to bedside”. At the Annual Meeting you will hear presentations from experts in oral medicine, new research findings and medicine advances. Not to mention the super-practical advice from you peers on how to soothe the pain and the worry.
The most gratifying results of the meeting are the sense of hope that blooms in the new folks when they see rooms full of laughing, hugging, perfectly “normal” folks. Most people do get through the major suffering that comes early on, many get off drugs entirely and all demand and receive better care after being armed with information, advice and even Peer Health Coaches (read Marc’s article on page 7) to help them advocate for their own best care.
Finally, getting together with others gives voice to the larger needs of this community. More awareness in the medical community to avoid long diagnostic delays (see Miki’s story on our front cover); sharing data in the patient Registry (see story on page 13) to support drug research and best practices in treatment plans; talking with Board members about how you can serve others or needs you see that you can help address; and most often shared: the sense of purpose that comes along with taking such a challenge as P/P and turning it into a way to provide meaning and support to others who come after.
Who wouldn’t want to be a better informed, healthier, stronger patient that can make a difference for others?
TOP LEFT: Ever the showman, IPPF BOD President Dr. Dave Sirois dons a new look at the 2009 meeting.
TOP RIGHT: Attendees from the 2009 AM in Los Angeles listen in.
BELOW: Drs. Grant Anhalt and Ani Sinha at the 2008 Celebration Dinner.