Category Archives: Health and Lifestyle

Amazon Smile
If you’re like me you do a lot of shopping online. It’s convenient. It’s safe. And sometimes the prices just can’t be beat. To make sure I get a great deal from a reputable company, I do most of my shopping through AmazonSmile (, part of

My AmazonSmile homepage

My AmazonSmile homepage

AmazonSmile ( is a simple and automatic way for you to support the IPPF every time you shop, at no cost to you. When you shop at, you’ll find the exact same low prices, vast selection and convenient shopping experience as, with the added bonus that Amazon will donate a portion of the purchase price to the IPPF.  To shop at AmazonSmile simply go to from the web browser on your computer or mobile device. You may also want to add a bookmark to to make it even easier to return and start your shopping at AmazonSmile.

There are tens of millions of products on AmazonSmile are eligible for donations. You will see eligible products marked “Eligible for AmazonSmile donation” on their product detail pages. Recurring Subscribe-and-Save purchases and subscription renewals are not currently eligible.

The circled area lets you know the product is an AmazonSmile participating product.

The circled area lets you know the product is an AmazonSmile participating product.

It’s easy to use because you use the same account on and AmazonSmile( Your shopping cart, Wish List, wedding or baby registry, and other account settings are also the same. When you visit AmazonSmile ( for the first time you need to select the International Pemphigus Foundation to receive donations from eligible purchases before you begin shopping. Amazon will remember your selection, and then every eligible purchase you make at will result in a donation to the IPPF.


The IPPF is reviving support in the San Francisco Bay Area! This is a FREE event and patients, caregivers, and interested

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individuals are encouraged to attend.

IPPF MAB member Dr. M. Peter Marinkovich (Stanford University) and SF Support Group leader Prem Jain invite you to join them at Stanford Medical Outpatient Center.

WHEN: Saturday September 29, 2012 from 11am – 2 pm.
WHERE: Stanford University
The event is FREE. A light lunch is FREE. Parking is FREE.

Joining Dr. Marinkovich and Prem will be IPPF CEO Will Zrnchik and Senior Peer Health Coach Marc Yale. For more information or to register, click the Register button below.

by Kirsten R Bellur

It is almost four years ago that, after many failed attempts, I was finally accurately diagnosed with Pemphigus. In the face of that solemn pronouncement, I was told there was good news: it was only Foliaceous, a more benign form, that was easily treatable with Prednisone. And under that treatment it would most likely go away. But this sanguine vision and mitigating explanation of the seriousness of the illness did not obviate the fact that I was unable to regain the integrity of my skin.

No one asks to be “chosen” for chronic illness and/or pain.  There are, however, choices you can make which can either empower you or allow you to be a victim of circumstances.  Not feeling you are in total control does not mean you have no control but most of life is varying shades of grey. 

Potential Adverse Effects of Some Herbal supplements on Patients with Autoimmune Diseases 

By Victoria P. Werth, M.D.

Herbal supplements are used widely, and some of these supplements may stimulate the immune system in ways that could be harmful for people who have or are prone to autoimmune diseases.

There are a number of herbal medications that have been studied and have immunostimulatory effects.  Among these are Echinacea, the algae Spirulina platensis and Aphanizomenon flos-aquae.  We recently reported three patients with autoimmune disease, two of whom had pemphigus vulgaris, whose disease exacerbated shortly after beginning one of these herbal medications (Lee and Werth, Arch Dermatol 140:723, 2004).  In one case of dermatomyositis the patient re-flared several months later after rechallenging herself with the same herbal product.

These herbs seem to affect the immune system by increasing pro-inflammatory proteins produced by inflammatory cells, and their effects have been studied in a number of experimental models.  Studying the potential mechanisms and effects of these herbs in humans has been done in only a few studies, and much more work will be needed in order to document their potential toxicity in patients with autoimmune diseases.  Until these studies are performed, it would be prudent for patients with pemphigus vulgaris to avoid potentially immunostimulatory herbal medications.

by Anna Lisa Riccardi

Pemphigus patients in Italy experience problems very similar to patients in other countries.

The first problem consists in being correctly and quickly diagnosed. If the disease appears only in the mouth there are great chances that it will take a long time as most of the middle-aged Italian dentists have cursorily studied pemphigus at university and are therefore unable to recognize it. I remember that when my dentist saw my mouth (I had already been diagnosed and on prednisone) he told me that he had seen a mouth like mine only in a dead body and he advised me to take a lot of vitamins. It goes without saying that I ran away and changed the dentist. In fact the new generation of dentists have studied pemphigus better and are much more experienced.

by Rosalind Joffe

  1. Focus On What You Can Control. You may not be able to control the course of your illness. You can control the direction you take and the choices you make regarding that illness in the workplace.
    View your chronic illness as a challenge to meet, not an obstacle in the way.
  2. Ignore The Nay Sayers. Many people will tell you that work is stressful and that rest is best for people with chronic illness. Ignore them. Unpleasant work or too much work is negative stress and it can be bad for anyone’s health. Yes, you have more challenges now than you did before, but throwing in the towel is not the only option.
    Shape your work environment to meet your needs and you’ll help yourself.
  3. Come Out Of The Closet. Chronic illness is nothing to be ashamed of. If your illness impacts your work, keeping it a secret depletes your precious energy and gets in your way. Maintain your right to privacy and be judicious with your information, but don’t take on the burden of pretending that you don’t have a chronic illness.
    Be as public as you need to be and as private as you want to be.
  4. Don’t Just Survive – Thrive. It’s easy to feel that survival is enough. And most people who love you won’t expect more from you than that. But chronic illness or not, you weren’t born for mediocrity. Raising the bar doesn’t mean doing more than you can; it means aim high and seek what you need to thrive.
    Reach beyond relief; go for the satisfaction.
  5. Control The Message. Other people on the job will be looking to you to set the tone, and you can influence the way they respond to your illness. Design and control your message: What and how much do you want to say? Who do you want or need to say it to? When and where do you want to talk?
    Get out in front of the conversation.
  6. Don’t Let Your Illness Define Who You Are. Some people might try to paint you as a martyr; others may consider you less worthy of
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    recognition or promotion. Neither extreme works to your advantage; each gets in your way. The message you want to convey is that your chronic illness is simply one of several cards in your deck; just like everybody else.
    Having a chronic illness is neither a source of shame nor a source of pride.

  7. Look for the Silver Lining. Although you may not believe it now, workplace success in the face of illness is transforming. Many of us have found new strength and confidence – qualities we never knew we had – as a result of our illnesses. We have used this new found power to face other life challenges.
    It need not all be about the bad news.

Rosalind Joffe, M.Ed.

Thank you.

Rosalind Joffe coaches individuals to thrive in the workplace. Drawing on 25 years of work experience, living with chronic illness, she helps others to prosper in their work. Rosalind holds a B.S. in Communications and an M.Ed. from Boston University, Executive Coaching Certification from the Corporate Coach Institute, and Family Mediation Certification from Academy of Family Mediators.


©2003 Rosalind Joffe. All rights reserved. PLEASE SHARE THIS, with attribution, in its original format.

by Jennifer Williams

As all pemphigus and pemphigoid sufferers are quite aware, high doses of steroids are generally used in the first phase of treatment to control the blistering. Often to relieve the unpleasant side effects of such great doses, an immunosuppressive drug (used to prevent production of antibodies) is added into the mix to lessen the steroid dosage. As the side effects of steroids subside, patients are faced with a new challenge: coping with side effects of the immunosuppressive drugs.


In order for patients with pemphigus and pemphigoid to get control of their disease, there are certain drugs that patients must take. Prednisone is the first drug of choice for treating these diseases, and immunosuppressive drugs are often given as well to help patients reduce the doses of corticosteroids (prednisone/prednisolone).

Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects steroids can have, due to long term use, on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc, Vitamin D, and C levels; loss of potassium, fluid retention, gastric problem, hypertension, high cholesterol, and the body's ability to handle blood sugars.