IPPF eQuarterly

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IPPF

The Quarterly is published four times a year in the Spring, Summer, Fall and Winter. The material presented in our journal is not intended as medical advice. Readers are urged to consult their physicians before making any changes in their health regimen. The contents of the Quarterly cannot be reproduced or copied without written permission of the IPPF. The opinions of contributors are not necessarily those of the IPPF.

Issue 54 - Fall 2008

FallThis issue of the Quarterly focuses on misdiagnosis and advocacy. Our cover story talks about the importance of early and accurate diagnosis for pemphigus and pemphigoid patients and how the IPPF is working to improve patient's quality of life.

Dr. Ed Tenner discusses some interesting points he found in some professional journals and Dr. Terry McDonald helps patients see that it is what it is...except when it isn't. Read more on IVIg and Cyclophosphomide, the Community website, a letter from the Community, and how you can help our cause.

FROM THE TOP
Autumn Wishes

It's the dog days of summer here in Sacramento, the two weeks in August where our temperatures rise above 100 day after day and the tomatoes drown the garden. By the time you get this we will have a break in the weather; then the long low lines of sunshine signaling Fall, will touch us all.


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THE VIEW FROM HERE
Your Vote Counts

This is the last issue of the IPPF Newsletter before the November election. Please register to vote. I know I talk about this often, but I cannot emphasize enough how important it is to vote and hold our elected officials and ourselves accountable. This election will decide the turn which the countr

...

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INSIDE THIS ISSUE
Cover Story
Misdiagnosis: More Reason for Increased Advocacy & Awareness

Because pemphigus and pemphigoid are such rare diseases, one of the biggest problems in achieveing successful treatment is misdiagnosis. Misdiagnosis

...

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Editorial...
The Medical Observer

Recent articles in the medical literature will be of interest to our readers. A Letter to the Editor in the April 2008 issue of the Journal of Ophthal...
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Psychologically Speaking...
It is what it is...except when it isn't

First I want to apologize for not having time to answer all the questions at the Dallas Conference in April. I answered additional questions which wer

...

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NYU and IVIg...
Clinical Trials with IVIG and Cyclophosphamide

One of the newest treatments for pemphigus is intravenous immunoglobulin (IVIG). Immunoglobulins are one of the major classes of proteins in blood. IV

...

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From the Community...
Speaking Out for Change

Editors Note: This is an excerpt from a letter we received from the daughter of a patient expressing her gratitiude for the Foundation and its efforts

...

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Getting Involved...
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 viciou

...

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Explore the Website...
Have YOU Been Online Lately?

The IPPF website redesign continues to bring in compliments and comments from around the world. The IPPF Community site is where people interact with

...

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Things YOU Can Do...
Let's Raise Awareness

There have been two key challenges to raising awareness and funds about the devastating effects of pemphigus/pemphigoid -- to front-line medical profe...
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On the Grill in SoCal...
LA BBQ Serves Up Good Times for Everyone

 

Every summer people fire up their grills and invite friends and family over for an old fashioned bar be que.

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Website FAQs...
Frequently Asked Questions about the IPPF Community

Often times I get emails from people looking for help. I occasionally laugh when a member emails me back and says, Wow, that was a fast response! I la

...

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PEM Friends Update...
Away Weekend Enjoyable and of Great Value

PEM Friends, the UK wing of the IPPF, held their annual get-together at Carolyn and Raymond Blain's estate Westerhill, near Ashton-under-Lyne, Greater

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Featured Article

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 stand -- due to huge blisters right across both insteps -- and I could not get comfortable in bed due to blisters covering 70% of my body.

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