Monthly Archives: December 2008

One of the newest treatments for pemphigus is intravenous immunoglobulin (IVIG). Immunoglobulins are one of the major classes of proteins in blood. IVIG is collected from normal blood donors, pooled, highly purified, and treated to destroy viruses and bacteria. IVIG is now used to treat a number of autoimmune diseases including pemphigus.

There are two particularly attractive features of IVIG as a treatment for pemphigus:

  1. It can rapidly control active pemphigus without resorting to increasing steroid doses, in many but not all patients.
  2. It is unique in being able to selectively decrease blood levels of pemphigus antibodies (the antibodies that cause the disease) without lowering the level of normal antibodies. This feature of IVIG is very desirable, and unique, as all other treatments for pemphigus interfere with the production of all antibodies — the good along with the bad — resulting in unwanted side effects.

IVIG appears to work by speeding the degradation or inactivation of all antibodies in blood  the good with the bad. Then, the normal antibodies are replaced by those present in the IVIG that is administered, whereas abnormal antibodies are absent in IVIG and so they are not replaced — only they remain reduced following IVIG.

Complicating this story is that a regulatory mechanism in the body maintains constant levels of each individual antibody in the blood. Decrease in blood level of any antibody (including the pemphigus ones) stimulates new production of that antibody, and a rebound in their levels in the blood. Thus, even though IVIG can decrease serum level of pemphigus antibodies, these will go right back up shortly after the procedure.

This rebound can be minimized, in animals, by administering a cytotoxic drug that blocks the cells that make new antibodies. This approach has been used in humans to improve the effectiveness of plasmapheresis, another procedure that lowers serum level of antibodies. Similarly, this approach should also improve the effectiveness of IVIG.
[box type=”orange”]Antibody: A protein produced by a B cell in response to a specific foreign substance. Antibodies are the ?soldiers? which protect us against bacteria and viruses and infections.

Cytotoxic drugs: Affect the growth and action of some cells that cause the joint pain, swelling, warmth, and damage of arthritis. Cytotoxic drugs work over a long period of time, however, patients may not notice much effect for the first several weeks or months of treatment.

Immunoglobulins: See Antibody

Plasmapheresis: Removal, treatment, and return of blood plasma from blood circulation.

* more definitions available here:[/box]

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. We welcome letters like this – and letters for any reason – by postal mail or email and will gladly reprint them with your permission.

Enclosed is my donation in memory of my dear mother Phyllis Sigman who passed away 2002 from all the therapies and drugs as well of lack of knowledge of Bullous Pemphigoid. These brutal years of coming out of the shock and awe campaign that I witnessed from her disease have truly been the most challenging of my life.

{quotes}I don’t know why there is not a spokesperson in every single town in this country (to) educate the public about these horrifying and debilitating Pemphigoid diseases.{/quotes} It is an atrocity on the behalf of the medical community that this is not more mainstream. My mother suffered 6 different misdiagnoses from 6 different dermatologists in Arizona. I have shared this with people and told them to find out where they can go (to learn) about Pemphigus, including your Foundation.

It is a matter of life and death in some cases, as I found out the hard way. I appreciate what the Foundation is working to do and I also think that all dermatologists should not only be well educated in this disease but that the medical community should take this more seriously in every small town in this country.

I just want the Foundation to know that those of us who have lost our loved ones to the ravages of these diseases and the lack of interest or funding are never forgotten. Whenever I have a couple of extra dollars I will always support the Foundation. God Bless you all for what you are doing and I pray that no other families have to suffer the frustrations and desperation that my family had to endure. My mother was an extraordinary trooper through her 3 month battle, and perhaps if the big wheels who make the rules funded and took this more seriously she might be here today. God only knows.

Very Best Regards,

Diane Slocum

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Dear IPPF,

Thanks for all you are doing for this condition. I am a remission patient. If it had not been for the Dermatology Department at the University of Michigan I would be DEAD!! Before them, I spent 15 days in a hospital where no one ever heard of PEMPHIGUS.

I arrived at the UofM I was met by 4 Doctors & 3 nurses. They knew where they were going and what I needed. But, they gave me little hope because early intervention is the answer. I spent nearly 2 months there.

Today I am scarred and bruised but I AM ALIVE! If anyone is having a hard time finding treatment-please tell them my story of hope, persistence, remission! Unless you have been there you cannot imagine that hopelessness!! Bless you & all who are suffering.

Wanda Duncan



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.

The IPPF website redesign continues to bring in compliments and comments from around the world. The IPPF Community site is where people interact with other patients and caregivers on all issues related to pemphigus and pemphigoid. You can register for FREE at

There have been two key challenges to raising awareness and funds about the devastating effects of pemphigus/pemphigoid — to front-line medical professionals, donors, and corporate sponsors. In the early stages people tell me they feel ashamed, embarrassed, and frustrated when they explain this disease to others. A very courageous and accomplished woman said to me recently, No one here who knows me knows that I have this disease.

The other challenge is that once people have achieved a level of maintenance, or even remission, they no longer want to reflect on some of the darkest and most terrifying days of their life.

And yet, telling these stories is probably the most powerful way to move people to action and inspire people to support the development of resources, information, and perhaps even cures. Recently, people are speaking up about these trying times, and reaching out to educate others or to extend a helping hand to those just beginning this horrific journey.

If you haven’t yet, please take the time to go to our web site at and listen to Rebecca’s interview with Richard Cohen on WABC.

Opportunities like this national radio broadcast, stories in local newspapers, and presentations to relevant groups such as dermatologists and dentists help us spread awareness, and make an early and effective diagnosis of P/P possible. {quotes align=right}Personal stories also raise awareness of philanthropists and good social citizens who want to make a difference for people who are suffering.{/quotes}

Since I have been a part of the IPPF, many people have shared with me their stories of tragedies and triumph. These stories provide the incentive and the inspiration for donors, corporate citizens, and medical professionals to work to make a difference.

We thank all of the courageous people, such as Rebecca, who share their stories in order to help others, and honor those who suffer with P/P alone, or in silence.

Friday, 10 October 2008, PEM Friends will meet at 12.30pm for an informal lunch on the 6th floor of Peter Jones, Sloane Square, London. We’ll be

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joined by guest dermatologist, Dr. Jane Setterfield, BDS, MBBS, DCH, DRCOG, FRCP, who has both private and NHS patients in London, and have the opportunity to ask her questions and problems.

Friday, 20 February 2009, we’ll meet at 12.30pm for a very leisurely lunch. Following pressure from many PEM Friends, this will be our first lunch outside London. Dorothy Reynard has gone to a lot of trouble to find an ideal venue — The Place to Eat, on the first floor (through the ladies clothes dept) of John Lewis in Solihull, West Midlands. She has provided information for car drivers and those arriving by train; contact me and I’ll pass on the details. Our guest dermatologist will be Dr. Karen Harman, FRCP, DM, MB, BChir, who has both private and NHS patients in Leicester, will join us for lunch, answer questions, and discuss problems.

If you will be attending, please be kind enough to inform Carolyn Blain at 07831 349978.

Because pemphigus and pemphigoid are such rare diseases, one of the biggest problems in achieveing successful treatment is misdiagnosis. Misdiagnosis is considered to be the most common cause of patient safety issues. Delays in treatment and malpractice suits are noted to be the main outcome of misdiagnosis. (HealthGrades of Patient Safety Incidents (PSIs);, 2007).

MarCom Awards

The IPPF recently was recognized by the Association of Marketing and Communications Professionals with FOUR awards! The MarCom Awards signify excellence in marketing and communications projects such as print, online, and video.

Design/Website –
ENewsletter – The Quarterly

Website Overall –
Nonprofit Newsletter – The Quarterly

The 2008 competition had over 5,000 entries from the United States and several foreign countries. MarCom entries come from corporate marketing and communication departments, advertising agencies, PR firms, design shops, production companies and freelancers. The competition has grown to perhaps the largest of its kind in the world. A look at the winners shows a range in size from individual communicators to media conglomerates and Fortune 500 companies. The competition is so well respected in the industry that national public relations organizations, local ad clubs, and local business communicator chapters are entrants.

The MarCom Awards ( are administered and judged by the Association

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of Marketing and Communication Professionals. The international organization consists of several thousand creative professionals. The Association oversees awards and recognition programs, provides judges and sets standards for excellence.