One of the most challenging tasks the IPPF (and all rare-disease organizations) faces is addressing the issue of mis-diagnosis — how to educate and inform over 8,000 dermatologists in the United States alone, the vast majority of whom will…
As you read this issue I’m sure that you will be as amazed as I am about all the ways that members of the community reach out to serve others. This is the Support Issue, our time to highlight, thank…
Part of the training in most psychology doctoral programs involves going through your own personal therapy or analysis. There are two main reasons for this: 1) It is important for psychologists to truly understand themselves in every way, especially to…
If anyone would have told me four years ago that I would be writing this narrative, I would not have believed them. My name is Susan Gonzales and I was diagnosed with pemphigus vulgaris (PV) in February of 2006.…
After being diagnosed in August 2007 with Bullous Pemphigoid (BP), I wondered what I could do to help others who were suffering with this disease. I felt that there had to be something that I could do to help. I…
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…
The IPPF continues to grow and reach out to new members world-wide. Our Community Forums include areas for pemphigus, pemphigoid, pets, people under 30, Spanish speakers, and more! Our Facebook page has almost 150 fans! Search for us (International Pemphigus…
This article is to share our experience with numerous doctors, in our quest to obtain a correct diagnosis and supporting treatment for my husband’s condition. I have a true passion in sharing both the positive and the obstacles we have…
On November 6, 2009, the UK’s PEM Friends met for their regular Autumn Lunch which is always held in London. As usual, it was in Peter Jones, Sloane Square. The management is always extremely helpful and we have all…
“From everything we know about pemphigus vulgaris, you’re in remission.” I just stared at the doctor in disbelief. I think I actually said, “You’re kidding me, right?” Probably not the best response. But he smiled, as did the other two…
