PV Patient tells of her “Roller Coaster Ride with Pemphigus” in Derm PA Journal

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 never see a case of P/P. Especially when the doctors who actually treat medical patients (and don’t just do plastic surgery) are so challenged with complex medical cases and little time for appointments — much less an opportunity to read letters or brochures after needing to scan medical journals, online and in print.

But members of your community are working to reach medical practitioners and get the word out. Take Miki, for example. Many of you know Miki from the email discussion group, always ready with a story filled with wry humor, but did you know she is working from her armchair to get the word out on P/P?

Miki wrote and contributed an article to the Journal of Dermatology Physician Assistants (JDPA) letting them know about the signs, symptoms and urgency of getting PV diagnosed quickly (see Miki’s full article at .

The JDPA is the journal that reaches out to a majority of practicing dermatology PAs as well as other healthcare professionals including nurse practitioners. A paper version of the Journal is mailed to over 1,700 PA’s nationwide as well as to pharmaceutical industry members and dermatologists and the entire board of the American Academy of Dermatology (AAD) and the American Academy of PAs (AAPA). Finally, this article will be archived online and whenever someone Googles “pemphigus” they will be able to read more about our disease.

In addition to allowing the IPPF to share information with dermatologists across the country, the JDPA also was generous in supporting the IPPF with a corresponding invitation/promotion for our Annual Meeting in Philadelphia. We expect to have the opportunity to deeply educate these PA’s with medical info and patient concerns at the meeting.

In 2010, the IPPF will continue this awareness building activity with articles for the Journal drafted by our Medical Advisory Board directed to dermatology practitioners — sharing info and inspiring them to get involved in spreading awareness. Miki opened the door to the possibility that many THOUSANDS more dermatologist’s staff will consider P/P as a possible diagnosis and have resources to help patients consider options and get effective treatments. Give Miki a hug (she loves them) in person or by email, when you have the chance!

Dr. Steven K. Shama* made comments alongside Miki’s article encouraging his dermatology peers to educate general medical practitioners that pemphigus and pemphigoid experts are available to diagnose and treat disorders of the skin, hair, nails, and most mucous membranes, to remember the importance and power of touch, and to make sure doctors have P/P expertise.

The IPPF encourages any medical professional to contact us

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and we can put them in touch with pemphigus and pemphigoid experts. It was the IPPF support network who actually gave the name of dermatology specialist, Dr. Grant Anhalt (IPPF Medical Advisory Board member and part of the inspiration and motiviation to start the IPPF), to help Miki and many others just like her.

The IPPF has listings of referral doctors available online in the IPPF Community (community.pemphigus.org) that are updated monthly and can be downloaded/printed out. If you know of a doctor not on our list, but you think should be, fill out a short form at http://ippf.referrals.sgizmo.com so we can add them to our list.

* Dr. Shama is on the teaching staff of Harvard Medical School and has been an actively practicing dermatologist since 1981. A highly regarded physician and lecturer, Dr. Shama has presented more than 100 of his insightful workshops to medical professionals throughout the United States.

Posted in Issue 60 - Spring 2010
The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.