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The Powerful, Positive Support of People

The IPPF Annual Meeting provides a unique, quality opportunity for all who attend. While the IPPF has a website, discussion group, local support groups and quarterly newsletter, the in person face-to-face annual meetings continue to enable patients, caregivers and doctors in attendance to have cutting edge, educational and meaningful interactions.

Seeing familiar faces, meeting internet friends never before seen, hugging, talking, being in the company of others with the same or similar diagnoses most people have never even heard of (and caregivers of those) is an almost unheard of and truly priceless experience. In this age of high technology and human-machine interfacing, this very basic human experience is more psychologically important than ever before.

For those who have never attended an Annual Meeting, just seeing the photos and reading descriptions will be a positive emotional and educational experience. For those in attendance it strengthens uncommon bonds and validates and energizes. Meeting and learning from expert doctors, while sometimes overwhelming, allows the dissemination of complicated basic and cutting-edge information. It also puts faces (and bodies!) on all in attendance. Everyone is in a room full of people who actually get it.

I attended my first Annual Doctor-Patient Conference in NYC in 2002. It was gratifying both socially and psychologically. Instead of being a person with a rare illness no one had ever heard of, I was surrounded by others in the same position. We didn’t even need words to communicate. That meeting was relatively tame by this year’s standards, but the benefits were immeasurable. After attending numerous meetings, I can honestly say they are always worthwhile and never boring. W zasadzie, the meetings seem to get better every year, although no one imagines how they can continue to improve!

Many people with chronic illnesses and other problems feel lonely, isolated, misunderstood and invisible. The IPPF Annual Meetings don’t allow time for loneliness, isolation, misunderstandings or invisibility. W zasadzie, the meetings are so jam packed with invaluable information and social/educational activities that the biggest complaint is sheer exhaustion (mixed with a sense of exhilaration). Although it is extremely challenging to travel in these difficult economic times, I would encourage those of you who have never attended an Annual Meeting to find a way to attend at least one. The IPPF Community is not large, but is ever growing. These meetings consistently educate and validate patients and caregivers (family, przyjaciele), and offer the necessary social support which will always be so important for human beings mental feelings of well being and connectedness. The success of this last meeting, worked on by so many for so long, will be remembered and cherished by all.

Napisano w Issue 57 - Summer 2009


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