Category Archives: Issue 54 – Fall 2008

I was skeptical about the end-results of the BOD retreat, but I played in the sandbox of that weekend and here is what I learned:

Board work is that work. It is hard and demanding and I owe a debt of gratitude to my colleagues on the Board who challenged themselves to participate when necessary or hold back on commenting when it wasnt constructive.

Retreats are exhausting physically and mentally. I came home a bit frayed, but ironically energized because the biggest lesson I learned is that my colleagues on the BOD have a number of talents and interests and through our discussions we discovered new ways of putting each of our talents to work.

Retreat weekends are just a beginning, a new start and a fresh slate. They are an opportunity for us to recommit ourselves to the tasks and challenges ahead of us.


When Dr. David Sirois, the IPPF’s BOD President, first approached me about joining the Board of Directors, I remember he had a needle in his hand and was about to shoot into a lesion in the back of my throat! It wasn’t a time for me to question him. But, I was dubious unsure about what my role would be and how I might be able to contribute to the IPPF’s mission.

I have been inspired to write this by two things which happened to me within the same week, and the conviction that the reason for raising awareness is to reduce the time
taken to get diagnosed. The measure of the effectiveness of our efforts in this area should be a marked decrease in that time.

I got an e-mail message from an old school friend who lives in Long Beach CA, while we lived in Boston, MA. This message contained the news that he had developed a rare autoimmune disease called pemphigoid. He did not remember that when I visited him in 2001, it was straight from my first IPF (as it was then known) conference full of information on PV. On a subsequent visit, I introduced him to Sonia Tramel, with whom he and his wife became friends. I tell this because it underlines a conclusion which I came to some time back: the general public (including friends and family) does not understand what we are going through and therefore forgets very quickly what information we pass on to them. How many of the readers have had friends frequently ask “What is that disease you suffer from

My second experience was acting as a guinea pig for my dermatologist who was teaching a class of Harvard medical students. I was examined by six small groups of students, totaling sixteen in all. Of these sixteen, three identified my lesions as, “erosions probably caused by pemphigus”. All of them saw the symptoms and were told what caused them. Doing this or by speaking to a class, which I have also done, you help those students recognize the symptoms on any patient they see in their career. Knowing that, each contact affects thousands of people.

When I was diagnosed with PV eight years ago, I learned how long it took for other people to be diagnosed. Since then I have been thinking of ways to get to people as soon as the symptoms develop, both to reduce the damage done by misdiagnosis and to get them in touch with the help available at the IPPF. My first interaction was with Carol Fischman to start the Boston Area Support Group. We tried various means to get publicity through a press release and an appeal to synagogues in the area with no noticeable result.

Over time, I became convinced that the impact of a TV exposure or newspaper article is immediate and short lived, but can help a few people who may be in the limbo caused by misdiagnosis or ignorance on the part of some doctors. A case in point resulted from a casual remark from a teenager on a TV show that her mother suffered from pemphigus which enabled me to track down a woman in a small town in Ontario, Canada, who thought that she was suffering alone and in fear of what her future held. I was able to connect her to our Community and reassure her that there is light at the end of the tunnel. On the whole, I think that the main benefit of random publicity is to make us feel less isolated.

After much thought, I have come to the conclusion that, while taking advantage of any opportunistic exposure to the media it can find, the Community should concentrate its publicity efforts on the entry points into the health system. There are various ways to achieve this.

Find out more by contacting the IPPF at or 916-922-1298.

Is it better to have more things for ourselves or to do more for other people Is it better to measure our lives by our money and possessions, or by the sum total and quality of our experiences This is about what we do versus what we have. It is about possibilities. This isn’t about educations, professions or work titles, but how we choose to live and/or use our time, our money, our expertise.

I suppose that it’s this time of year that can’t help but make me reflective about all the things to be thankful for. But as they say, feeling gratitude and not expressing it is like wrapping a present and not giving it. So, here’s my brief reflection on some of the many incalculable gifts that have been bestowed to help me get on my feet here at the IPPF. Janet, of course, has been an unending well of patient tutoring on the ins and outs of diagnoses, medications, side effects and patient challenges. Will has (repeatedly) explained to me PHP, HTML, Joomla, and made me even more grateful that he deals with all “that”. Thanks, team!

Beginning way back in 2005 the IPPF hosted an international scientific conference at the NIH (National Institutes of Health) which resulted in an agreement that it was important to develop consensus definitions for the disease of pemphigus. These definitions would be critical in supporting and evaluating clinical research. Following that meeting, the IPPF, through a directed fundraising campaign, delivered funds to sponsor and complete a pivotal study that developed such consensus definitions.