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Support Groups: How WE Can Help

When I was first diagnosed with PV, I was devastated as most people are. It had come on very fast, three weeks from first symptom, and very viciously. I could not eat any solids, I could not standdue to huge blisters right across both instepsand I could not get comfortable in bed due to blisters covering 70% of my body.

{quotes align=right}Despite what my doctors said, I could not see how I could get back to normal.{/quotes} Then I was able to get on to the IPPF website and the e-mail discussion group, where I would learn first-hand how others had recovered, and even gone into remission. I also learned how lucky I was in being diagnosed so quickly. Many people spend months, or years being treated for other conditions, which generally causes more harm than good.

My thought then turned to finding a way to reach those people who did not know that they had the disease, or had just been diagnosed. I found that the IPPF has a network of support groups that would provide a base from which to achieve my aim. Help arrived at one of the IPPF doctor/patient conferences. I attended a workshop where they gave us invaluable assistanceincluding the idea that all one had to do was pick a date, find a place and announce the formation of a group. The announcement was sent out by the IPPF to all their contacts in our area, and we ended up with twenty two people at that first meeting.

I realized that, since pemphigus/pemphigoid is so rare, trying to make the general public aware is a very inefficient way to reach the small number of people who will be affected. Better defined targets consist of the points of entry to the health care system Front-line doctors, dentists and nurses.

Coupling the facts that both diseases more often show initial symptoms in the mouth, and that there is a mammoth dental conference in Boston, attended by 28,000 dental professionals, we decided to start our awareness campaign at the Yankee Dental Congress. The IPPF has been invaluable by helping our support group put together an educational table. The IPPF provided all sorts of educational materials. Without the financial and design support of the IPPF, we could not have provided this educational effort.

If we accomplished nothing else, the effort paid off when a young woman, who works in a dental practice in Western Massachusetts, came to our table. She has been plagued by recurring blisters in her mouth. I directed her to the IPPF website in order to get information and to be referred to a local doctor who is familiar with the diseases, and who could possibly tell her that she is not imagining that there is something wrong.

カテゴリー: Issue 54 - Fall 2008


The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.