By Michelle Greer, RN, MBA
Although rare, most autoimmune disease states thankfully have support groups. For pemphigus and pemphigoid, there is the IPPF — International Pemphigus Pemphigoid Foundation. Every year, the foundation holds a patient-doctor meeting, and on April 24 through 26, it was held in Chicago. The meeting was very informative with experts in pemphigus and pemphigoid discussing various aspects of the condition, including treatment options and clinical trials. Although there are an abundance of dermatologists, there are very few who specialize in the diagnosis and treatment of autoimmune blistering diseases. Being part of the foundation gives you access to the experts in these conditions. In addition to various lectures about treatment protocols and side effects, the meeting ended with a panel discussion at which attendees could ask these physicians questions about the disease in general, as well as discuss issues specific to their situation.
Other attendees spoke about patient advocacy and how to be your own advocate. This is really important because there are many issues that people with chronic autoimmune conditions face in general, and people with pemphigus and pemphigoid have to deal with on a regular basis. Only you can say how you feel and what you need, and it helps to have someone to help or show you how to get what you need. This can range from access to a particular physician, medication protocols and side effects, insurance matters and overall function and ability to live an active lifestyle.
Because pemphigus and pemphigoid are so rare, they often go undiagnosed or misdiagnosed. One of the sessions was dedicated to discussing the foundation’s awareness campaign designed to educate dental professionals on oral pemphigus symptom recognition and diagnosis to ultimately get the correct treatment started more quickly, which will, in turn, greatly improve outcomes. The campaign includes training lectures for the 62 dental schools in the U.S., two videos and a fellowship program to allow side-by-side training with the experts and a consensus meeting to redefine existing diagnostic and treatment practices to result in improved patient care. It was amazing to hear the accounts of people who were misdiagnosed and prescribed treatments they didn’t need, who didn’t receive treatments they needed and who, ultimately, unnecessarily endured these painful blisters with complications that could have been prevented if diagnosed in a timely manner.
You can learn more about all of the wonderful things IPPF does for this community at www.pemphigus.org. A link on the homepage will take you to some of the meeting highlights, photos and videos in the upcoming weeks. Be sure to visit especially if you are unaware of this foundation or you missed the meeting!
