thetheQQuarterlyuarterlyPemphigus &Pemphigoid

INTERNATIONAL

FOUNDATION

a common hope an uncommon bond

The Quarterly Journal of the International Pemphigus & Pemphigoid Foundation

Spring 2007 • iSSue #48

SAVE THE DAY!The 10th Annual Patient/Doctor Meeting will be held in Toronto, Canada from September 15-16, 2007. See Back Cover for more details.

in thiS iSSue

2 Getting Ready for 2007

3 We Must Work Together!

4 A New Treatment for Recalcitrat PV?

5 Is Pemphigus More Common in Women?

7 Psychologically Speaking with Dr.

McDonald

8 Patient Perspec-tive: Combo Infusion

Therapy

112006 Annual Meeting Q&A

12Medical Information You Can Use

14Thank You to our 2006 Meeting Sponsors and Vol-

unteers

15Dual Treatment Shows Promise

Boston Support Group Spreads Awareness at YDC

continued on page �…

www.pemphigus.org

Yankee Dental Conference® 32January 24-28, 2007

Boston, Massachusetts

� ThePemphigusQuarterly•Spring�007

A publicAtion of the internAtionAl pemphiguS &

pemphigoid foundAtion

BOARD OF DIRECTORS:President - David A. Sirois, DMD, PhDVice President - The Honorable Janice A. TaylorSecretary-Treasurer - Lee A. HeinsMembers - Dan Goodwill; Paul M. Konowitz, MD, FACS; Karen Means; Marsha Pepper; Sonia Tramel; Terry Wolinsky-McDonald, Ph.D.; J. Gregory Wright, MBA

EXECUTIVE DIRECTOR - Janet D. Segall (Interim)DIRECTOR OF PATIENT SERVICES - Janet D. SegallOFFICE/ADMINISTRATIVE SUPPORT - Olga Bergelson

MEDICAL ADVISORY BOARD:

Jean-Claude Bystryn, MD, Chairman, IPPF Medical Advisory Board, Dept. of Derm., New York University Med. Center, NY, NY

Masayuki Amagai, MD, PhD, Department of Dermatology, Keio University School of Medicine, Tokyo, Japan

Grant Anhalt, MD, Department of Dermatology, Johns Hopkins University Medical Center, Baltimore, MD

Martin Black, MD, FRCP, FRCPath, Professor of Dermatological Immunopathology, Guy’s King’s & St Thomas’ School of Medicine, London, UK

Sarah Brenner, MD, Department of Dermatology, Sourasky Medical Center, Ichilov Hospital, Tel-Aviv, Israel

Luis Diaz, MD, Professor and Chairman, Department of Dermatology, University of North Carolina, Chapel Hill, NC

Sergei Grando, MD, PhD, DSci, Department of Dermatology, University of California Davis Medical Center, Sacramento, CA

Russell P. Hall III, MD, J. Lamar Callaway Prof. and Chief, Dept. of Dermatology, Duke University School of Medicine, Durham, NC

Marcel Jonkman, MD, PhD, Prof. and Chairman, Dept. of Dermatology, Univ. of Groningen, Groningen, the Netherlands

Robert E. Jordon, MD, Professor and Chairman, Department of Dermatology, University of Texas Medical School, Houston, TX

Francisco A. Kerdel, MD, Professor Clinical Dermatology, Dept. of Dermatology, University of Miami Medical School, Miami, FL

Neil Korman, MD, PhD, Director, Immunobullous Disease Program, Case Western Reserve University, Cleveland, OH

Dedee F. Murrell, MD, Associate Professor, Dept. of Dermatology, St. George Hospital, Univ. of New South Wales, Sydney, Australia

Carlos Nousari, MD, Professor, Department of Dermatology, University of Miami, Miami, FL

Amit Pandya, MD, Professor, Department of Dermatology, University of Texas Southwestern Medical Center, Dallas, TX

James Sciubba, DMD, PhD, Director of Dental and Oral Medicine, Johns Hopkins University, Baltimore, MD

Animesh A. Sinha, MD, PhD, Head, Division of Dermatology & Cutaneous Sciences, Michigan State University, East Lansing, MI

David Sirois, DMD, PhD, Assoc. Dean for Graduate Education, Assoc. Prof. of Oral and Maxillofacial Pathology, Radiology and Medicine, New York Univ. College of Dentistry, NY, NY

John R. Stanley, MD, Professor and Chairman, Department of Dermatology, University of Pennsylvania; Philadelphia, PA

Robert A. Swerlick, MD, Chief of Dermatology, Emory University, Atlanta, GA

Victoria Werth, MD, Department of Dermatology, University of Pennsylvania, Philadelphia, PA

THE QUARTERLY STAFF: Editor in Chief - Janet D. Segall; Creative Director - William J. Zrnchik II

CONTRIBUTING AUTHORS: Dr. A. Razzaque Ahmed, Kirsten R. Bellur, Dr. Michael Heffernan, Dr. Terry Wolinsky McDonald

HEADQUARTERS:

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Dr.DavidSirois,President,

BoardofDirectors

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InternationalPemphigus&PemphigoidFoundation �

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Director

The International Pemphigus & Pemphigoid Foundation is a 501(c)(3)

nonprofit organization.

Our goals are to increase awareness of

pemphigus and pemphigoid among the

public and the medical community; to

provide information and emotional support

to pemphigus or pemphigoid patients and

caregivers; to provide referrals to specialists;

and to support research into advanced

treatments and a cure.

Founded in 1994.

The Quarterly is published: Spring, Summer, Fall

and Winter.

The Quarterly is provided free of charge to our

donors as a thank you for their support.

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 International Pemphigus

& Pemphigoid Foundation. All inquiries

regarding copyrighted material from this

publication should be directed to: International

Pemphigus & Pemphigoid Foundation, Attn:

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The Honorable (Name) House of Representatives Washington, D.C. 20510 Please include your return postal mailing address when corresponding. You may phone the US Capitol switchboard at 202-224-3121. A switchboard operator will connect you with the office you request.

� ThePemphigusQuarterly•Spring�007

by A. Razzaque Ahmed, M.D. Center for Blistering Diseases New England Baptist Hospital Boston, MA

Rituximab (RTX) is anti-CD20 chimeric antibody that selectively targets B

cells. CD20 is a molecule that functions as an antigen for it. CD20 is expressed on mature antibody producing B cells, but not on plasma cells.(1) The FDA has approved the use of Rituximab for the treatment of B cell lymphomas.(2) Since the pathogenic and clinical manifes-tations of PV appear to be antibody related, it could be hypothesized that eliminating the pathogenic antibody and the cells that produce it, might be more effective than general nonspecif-ic immune suppression. This is the ra-tionale for using Rituximab in treating pemphigus vulgaris. Indeed, success with the Rituximab has been observed in many autoimmune diseases which are mediated by antibodies such as systemic lupus erythematosus and im-mune thrombocytopenic purpura.(3)

In a recent review of the available published literature in the English language on Rituximab was done. (4) There were 17 patients presented in ten different studies. These patients had been treated with RTX using the lymphoma protocol. In this protocol, patients are given four weekly infu-sions. The dose is 375 mg/m2 for each infusion. The results were variable, but overall it appeared that 88% of the pa-tients were free of lesions, for at least a six months follow-up period. Unfortu-nately, many of the patients were treat-ed simultaneously with conventional immunosuppressive therapy (CIST). In many of them, the use of RTX allowed for lowering the dose of Prednisone. One of the major problems associated with RTX in these patients was infec-tion. Four patients had serious infec-tions and in addition one patient died

from it. None of these patients got intravenous immunoglobulin (IVIg).

Since the cumulative literature supported the use of RTX in produc-ing a positive clinical outcome, we decided to study the use of RTX in recalcitrant pemphigus vulgaris. Our major concerns were (i) can the use of RTX eliminate conventional immu-nosuppressive therapy, and (ii) could RTX therapy produce prolonged and sustained clinical remissions. Recently we have published data on 11 patients in the October 26, 2006 issue of the

New England Journal of Medicine.(5) To the readers of the Quarterly, it would be important to identify the group of patients we studied by providing some key characteristics. The impor-tant features of this group were that they all had been treated initially with Prednisone and other immunosuppres-sive agents. The mean daily dose of Prednisone was 125 mg. All had been treated with mycophenolate morfetil, 10 with azathioprine, 9 with methotrex-ate and 6 with cyclophosphamide.

Since the patients did not respond to conventional immunosuppres-sive therapy, they were subsequently treated with IVIg. The IVIg was not totally effective. To augment the effect of IVIg, Dapsone with methotrexate

by Michael P. Heffernan, M.D. Associate Professor of Dermatology Div. Chief & Residency Program Dir. Wright State University, Boonshoft School of Medicine

Mucous Membrane

Pemphigoid, also known as Cicatricial Pemphigoid, is a serious autoimmune blistering disorder that can result in blindness and other complications as the result of scarring of the mucous membranes. To our knowl-edge, there have been 2 reported uses of Etanercept for MMP in the literature.

In the October and November edi-tions of the Archives of Dermatology, we reported on our experiences with 4 additional patients. Three responded to treatment with Etanercept 25mg twice a week and one who responded to Infliximab at 5mg/kg at weeks 0, 2, 6, and every 8 weeks thereafter. All of our patients had failed prior standard treatments.

All of our patients responded rapidly and their response persists. We did have 1 patient whose disease recurred when she stopped therapy. Fortunate-ly, she was able to regain control with retreatment. Since the publication was submitted, we have treated 2 additional patients with Etanercept with the same results.

Additional cooperative, prospective studies are needed to confirm these results. I plan to propose this study at the next meeting of the Medical Der-matology Cooperative Trials Group (http://www.meddermsociety.org/). I hope that the use of Anti-TNF therapies for MMP will teach us something new about blistering diseases and help us to identify more effective and safer treat-ments for our patients who suffer from them.

For more information feel free to contact Dr. Heffernan at michael.hef-fernan@wright.edu. •

Anti-TNF Therapy for Mucous Membrane Pemphigoid

Dr.MichaelHeffernan

Rituximab: A New Treatment for Recalcitrant PV?

continued on page �…

InternationalPemphigus&PemphigoidFoundation �

Pemphigus may be Affected by Hormonal Intakeby Sarah Brenner, M.D. Department of Dermatology Tel Aviv-Sourasky Medical Center, and Tel Aviv University Sackler School of Medicine, Israel

The International Pemphigus

& Pemphigoid Foundation re-cently conducted a survey for us on some aspects of pemphigus, in par-ticular the gender distribution of the patients, and the relationship between the disease and the use of sex hormones. A total of 249 members of the Foundation answered a short questionnaire on their gender, the age at which they developed the disease, and whether they were taking hormones when it began. There were 151 women and 91 men, a female:male ratio of 1.7:1.

Is there indeed a predominance of women among pemphigus patients? Or are women simply more responsive to questionnaires?

If these numbers do reflect a female predominance, we would like to ad-dress the possible reasons. A major fac-tor is the involvement of the immune system in the course of the disease that makes women more susceptible to this and other autoimmune disorders. Sex steroids affect how the immune system develops and functions differently in men and women. The currently held

view is that androgens, the male hormones, are anti-inflammatory and depress immunity, while estrogens, the female hormones, enhance it. The result is that women have a greater immune response to exter-nal agents. It is known, for instance, that females are more prone to develop autoimmune diseases like systemic lupus erythema-tosus (SLE) and multiple sclerosis, while males tend to develop lupus later in life or due to disturbed hormonal regulation. Indeed, more than 75% of patients with autoimmune diseases are women. Thus, it is clear that hormonal make-up renders women more likely to develop pemphigus than men.

A second factor in the preponder-ance of women among pemphigus patients is the strikingly high propor-tion of users of hormone replace-ment therapy (HRT) found among postmenopausal women. In the survey, 20 of the 43 postmenopausal women were on HRT at the time they devel-oped the disease. The immune system of women is exposed to estrogens in a number of ways, some internal like the natural estrogenic hormones produced in conditions such as pregnancy. But, estrogenic hormones can enter the body from outside as well, for medical reasons like replacement therapy and contraception, or via environmental agents such as plastics, pesticides, plants, and the like.

Almost every second woman after menopause in the survey was consum-ing some form of sex hormone. This finding is higher than the 30% figure for hormone replacement therapy documented in a 2001 study of all adult women in the United States and the United Kingdom1. Do these figures argue for the role of hormone supple-ments in the disease?

Another interesting finding is the

use of hormonal supplements in 4 out of the 91 men in the survey. The purpose of this hormone intake by men is unknown and has not been addressed in the medical literature. Epidemiological studies are needed to assess the extent of this phenomenon among men, but one can speculate on a trend of treatments for male meno-pause (andromenopausa) or anti-aging. Does testosterone intake play a role in pemphigus? This finding merits further study.

We wish to express our special thanks to Janet D. Segall, Interim Ex-ecutive Director and Director of Patient Services, and Will Zrnchik, Director of Development and Communica-tions, of the International Pemphigus & Pemphigoid Foundation for con-ducting the survey discussed here. We would like to thank all those who answered the survey, and look forward to more such service in the future. •References

1. Coombs JN, Taylor R, Wilcken N, Fiorica J, Boyages J. Hormone replacement therapy and breast cancer risk in California. Breast J. 2005;11:410-415.

Is Pemphigus More Common in Women?

Prof.SarahBrenner

Arecentsurveyof249participatnsconductedbyProfessorBrennerandtheIPPFrevealedthatwomenmightbeaffectedbyhormonalintakemorethanmen.151womanrespondedalongwith91menforafemale:malerationof1.7:1,

� ThePemphigusQuarterly•Spring�007

was added to the IVIg. The mean dura-tion of all previous systemic therapy, prior to the use of Rituximab, was 68.8 months, indicating that the disease had been present for 6 – 7 years and had not responded to all of the known therapies for PV. These patients also had extensive disease involving the skin and multiple mucous membranes. The patients were treated with RTX in a newly designed protocol never published before or used to treat any other disease. The patients were given the same dose of RTX as in previous studies (375 mg/m2). The protocol was as follows:

Prior to the initiation of RTX, the patient’s got one cycle of IVIg. Then during the first month of therapy, for the first three weeks, they received weekly infusions of RTX. In the fourth week, they received one cycle of IVIg. This same procedure was repeated in the second month. In the 3rd, 4th, 5th, and 6th month, the patients received only one infusion of RTX followed by one cycle of IVIg. Hence, the patients got a total of 10 infusions of RTX in this particular protocol.

Shortly after the initiation of RTX, the patient’s B cell counts were re-duced to zero. Hence, the IVIg was given primarily to assist preventing infection. In addition, it was also used as an immunomodulatory agent. It was hypothesized that if the pathogenic an-tibody and the cells producing it were no longer present, this would provide the immune system an opportunity to regulate itself to the predisease state.

Indeed all of the 11 patients have stayed in remission. The mean dura-tion of remission has been 31.1 months. Two patients had recurrences. In both patients, the recurrences were treated with only RTX and the patients went into a prolonged clinical remission.

It is critical to be aware of the fact that RTX warrants the very rigorous prescreening procedure. Prior to initia-tion of RTX therapy, we have always ob-tained clearance from the primary care physician of the patient. In addition, an oncologist has evaluated the patients

requiring a CT scan of the neck, chest, abdomen and pelvis to exclude any existing lymphomas. Evaluation of liver and kidney functions and the sero-logical tests for various infections was done. During the RTX therapy, CBC’s, chemistries, but most importantly, peripheral blood T & B cells were moni-tored on a very regular basis. Until the B cells have returned to normal, month-ly infusions of IVIg were given. Once the B cells returned to normal, the IVIg protocol was completed in which the patients received infusions at 6, 8, 10, 12, 14, and 16 week intervals.(6) We be-lieved this was essential to help restore the immune system to its normal bal-ance. Recurrences have not been seen to date in all of those patients in whom this protocol was completed. Hence the ability to complete the IVIg pro-tocol is an integral component of this therapy and needs to be emphasized when initiating the therapy.

Hence, this study of a limited number of patients clearly indicated that RTX used with IVIg, according to this protocol, produces long-term clinical remission. None of the patients had any serious side effects and none of them developed any infections. Therefore, there is optimism to indicate that RTX would be a valuable form of therapy in treating patients who have recurrent disease who are non-respon-sive to conventional immunosuppres-sive therapy and only partially respon-sive or non-responsive to IVIg therapy. This protocol is certainly not the only protocol that could be effective. Indeed studies in the future might provide valuable information on the use of RTX

using different protocols. In closing it is important to empha-

size two issues to the readership. First, that RTX is not for every PV patient. Second, RTX is not a benign harmless drug. Its use can have serious conse-quences. Experience with the drug is limited and additional studies that must include long- term follow-up are critical. If you think you are an appro-priate candidate for RTX, please speak to your dermatologist.

Dr. Ahmed can be reached at arahmedmd@msn.com •

References1. Maloney DG, Smith B, Rose A. Rituximab:

mechanism of action and resistance. Semin Oncol 2002;29(Suppl 2):2-9.

2. Rastetter W, Molina A, White CA. Rituximab: expanding role in therapy for lympho-mas and autoimmune diseases. Annul Rev. Med. 2004;55:477-503.

3. Chambers SA, Isenberg D. Anti-B cell therapy (Rituximab) in the treatment of autoimmune diseases. Lupus 2005;14:210-4.

4. Abdul Kader El Tal, MD, Marshall R. Posner, MD, Zachary Spigelman, MD, and A. Razzaque Ahmed, MD. Rituximab: A monoclonal antibody to CD 20 used in the treatment of pemphigus vulgaris. JAAD September 2006;55(3):449-466.

5. A. Razzaque Ahmed, M.D., Zachary Spigel-man, M.D., Lisa A. Cavacini, Ph.D., and Marshall R. Posner, M.D. Treatment of Pemphigus Vulgaris with Rituximab and Intravenous Immune Globulin. N Engl J Med. 2006;355:1772-9

6. A. Razzaque Ahmed, MD, DSc; Mark V. Dahl, MD; for the Consensus Development Group. Consensus Statement on the Use of Intravenous Immunoglobulin Therapy in the Treatment of Autoimmune Mucocu-taneous Blistering Diseases. Arch Dermatol. 2003, Aug;139:1051-1059.

...continued from RITUXIMAB, page �

A. RAZZAQUE AHMED, M.D.Educated and trained at Harvard University, Dr. Ahmed is the Director of the Center for Blistering Diseases. He designed and created the first clinical facility exclusively devoted to the care, education, and total well being of patients with blistering diseases. He has built an accom-panying laboratory that focuses on studying molecular mechanisms in blistering diseases. Dr. Ahmed was a pioneer in identifying genes that predispose to blister-ing diseases. He pioneered the use of IVIg in blistering diseases and singularly negotiated with Medicare in get-ting national medical coverage for its use. Dr. Ahmed has worked on blistering diseases for 25 years and authored over 250 papers on it.

InternationalPemphigus&PemphigoidFoundation 7

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 circum-stances beyond your control. It is normal to ask “why me?” but there are no easy answers; it is not because you are a bad person and somehow need to be punished. Sometimes things really do just happen, and in the case of certain diseases and disorders, some people may be genetically predisposed from birth. Scientists are continuing to study this connection, along with stress and other environmental factors. Not feeling you are in total control does not mean you have no control; black and white exist, but most of life is varying shades of grey. In fact, black and white thinking is a very common “cognitive distortion”.

After you are diagnosed you will feel emotionally different (e.g., anxiety, depression, anger, irritability, lack of energy, sleep and appetite changes). Sometimes the medications that are used to treat the disease magnify the above changes. Waiting – for the medications to work, in doctors’ offices, hospitals, etc. – will add to the feelings of loss of control. Sometimes we have to miss a lot of work days, which can be especially disconcerting if we define who we are by our work. Changes will be inevitable. It will be important for you to start to accept a certain amount of lack of control over aspects of your life which you previously took for granted. You will adapt by using more positive coping strategies.

First you will come to accept the things you can not control, since none of us has a crystal ball. The serenity prayer used by AA and NA is often helpful here. The future is uncertain for everyone, but not the same as in this new way for you. Your primary support system may or may not be accessible for you in the ways you need it. How do you tell people who are not afflicted in this way how you honestly feel? When someone says, “My you look re-ally good; you must be getting better”, how do you respond? You will want to explain the disease and its unpredict-ability to them, but will they really get it? Will they be able to understand? Will they want to understand? Can they really handle the truth? If not, and you have not come to terms with the illness yourself, this will be a major problem for you. But, remember, this problem will not take away all of your control unless you allow it to do this.

My own standard response is “thank you” to a compliment and “why don’t we talk about how YOU are feeling?” to “How are you feeling?” “I’m fine” or “I’m here” may also be appropriate, depend-ing on who is asking the question. My husband, who does not have a chronic illness, has a standard response when asked how he is: He just says “abso-lutely”. Some people don’t even realize he has not answered the question. For most people, “Hi; how are you?” is just a greeting. They don’t really want to know, so just take it as a greeting and don’t feel obligated to educate them or to get things off your chest unless an exercise in futility and frustration is

what you want to use your precious energy on. Some people rejoice in the opportunity to make it a production. That choice is yours. Just remember that using your energy in negative ways saps the positive energy too. If you can focus your energy on positive coping you will regain more control.

Coming to terms with your illness does not mean you have to like it. It is acceptance, pure and simple. This does not make you a “walking disease”; you are a cognitive (thinking) human being who just happens to have this rare illness. You will continue to have feelings, and these feelings will get hurt. It is all part of being human. Waiting for treatment or for transporta-tion, and being more dependent for certain activities of daily living (ADL’s) can be frustrating. Keeping a book handy or crossword / word puzzles, music, letter writing will let you feel you are not wasting your time. Some people take their computers with them. Work on using the time con-structively (something you can control to an extent), and don’t allow yourself to feel that precious time is being taken from you. Be prepared for the waiting. I don’t go anywhere without a book or journal articles. A lot of people have these new fangled cell phones that do almost everything, including computer access (something I remain technologi-cally challenged to do). The choices are endless, unless you choose to limit yourself.

When you find yourself waiting and waiting, anger and frustration can easily take over, but they don’t have to; it is your choice. I liken this to being stuck in traffic, especially if I am running late for an appointment. I have a choice: I will be late no matter what, but I can

Loss of Control: Your ChoiceCoping with Chronic Illness Starts with Acceptance

continued on page �0…

Psychologically Speakingwith Terry Wolinsky McDonald, Ph.D. Licensed Clinical Psychologist Dr. McDonald can be reached at tmcdii2@msn.com

� ThePemphigusQuarterly•Spring�007

A Promising Treatment Protocol for Refractory Pemphigus Foliaceousby Kirsten R Bellur

After several misdiagnoses,

I was eventually correctly diagnosed with a severe case of Pemphigus Fo-liaceous (PF) in July, 1998. Over the next 5 years, I had unsuc-cessful results with the commonly used, so-called “steroid YO-YO diet.” Prednisone, Imuran®, and even CellCept® proved ineffective at a dose less than 1500 mg/day. I went thru that regime twice, and after every failed attempt, my dose of prednisone went higher and higher. My condition had become recalcitrant. At that point, I had almost given up the hope of ever reach-ing long-term durable clinical remission.

I knew there were newer and better treatments options available, but since they were very expensive, and mostly used off-label for Pemphigus Vulgaris (PV), I was aware it would be an up-hill battle to get approval from my health insurance provider without support from a leading expert in the field of im-muno-dermatology. I decided then to write a letter to M. Peter Marinkovich, M.D., at Stanford University, (09/11/03) and explained my difficult situation. He requested that I visit him right away, so that we could work out a different treatment regime.

We tried IgG infusions. At first, they appeared to work well; I stopped using CellCept® and had tapered prednisone to a very low dose. But then I had a re-flare. We scheduled another course of IV IgG, but my condition worsened -- IgG proved not to be an effective monotherapeutical treatment option for me.

After reading the very promising study done with rituximab in Cologne, Germany1, where one of the partici-pants in the trial was a PF patient, we decided to schedule a 4 week course of rituximab following the protocol (375mg per sq.m of body surface area). Because of my past experience with tapering of CellCept®, we added a course of IV IgG (4 infusions 4 consecu-tive days and 1 infusion every 4th week over a period of 6 months (4 + 6, a total of 10 infusions) (2g/kg of body weight), beginning shortly after the last infusion of Rituximab. It seemed to make sense to combine Rituximab with IgG, since it is possible to boost the immune-system after you have reduced the B cells. The two treatments can act synergistically.

It is now 16 months since I had the last rituximab infusion and 4 months since I had my last IV IgG. My condition improved immediately when we started the rituximab infusions, and I have been – as of today (01/01/07) - symptom free for more than 14 months. My drug taper was done on a “fast-track;” therefore, the quality of my life has improved greatly, as I no longer have to endure the pronounced side-effects of prednisone and Cell-Cept®.

I was very encouraged, when I read the recent article in the New England Journal of Medicine, entitled “Treat-ment of Pemphigus Vulgaris with Rituximab and Intravenous Immune Globulin”2. I was aware that the Com-bo-Infusion-Therapy had been used for severe conditions of Pemphigus Vulgaris, though it followed a different protocol than the one I underwent.

However, the most compelling reason for sharing my personal experi-ence with the Combo-Infusion-Therapy is that, due to the simple statistics of ill-

ness prevalence, those patients afflicted with a condition other than PV are less the focus of attention, and therefore seldom included in any clinical trials. An unintentional but unfortunate result of this is that it becomes an even harder battle to get our health insurance pro-viders to cover the cost of expensive treatments. I have tried to address that problem in the past, but the answer has always seemed to be: PF patients will get the same treatment as those with PV. Thus, for PF patients, without trials or case studies as evidence, it is extremely difficult to develop logical arguments in favor of getting the treat-ments approved.

It has been a struggle to get to where I am at today. I would never have been able to achieve it alone. Consider-able credit must go to Dr. Marinkovich,

who has patiently helped me fight my battles to get approval for the cost-ly but effective Combo-Infusion-Therapy.

I hope that by briefly sharing my experience, I may in some way em-bolden other Pemphigus patients struggling with years of ineffective or under-effective drug therapies to consider pursuing this very prom-ising combo protocol. I

realize it will only become a “standard of care” if and when the usefulness of the protocol is known to more practic-ing dermatologists. But realistically, often times, when it comes to the treat-ment of rare diseases like Pemphigus, it is the patient who needs to take greater control of his/her own destiny. •References:

1. Arin, M.J., Engert A., Krieg, T. And Hunzel-man, N., “Anti-CD 20 monoclonal antibody (rituximab) in the treatment of Pemphigus” , British Journal of Dermatology, 2005, 153, pp620-625.

2. Ahmed, A. R., Spigelman, Z.,Cavaccini, L.A. and Posner, M.R., ”Treatment of Pemphigus with Rituximab and Intravenous Immune Globulin”, The New England Journal of Medicine, October, 2006, pp1772-1779.

Combo-Infusion-Therapy

KirstenR.Bellur

It has been a struggle to get

to where I am at today. I would

never have been able to achieve it

alone.

InternationalPemphigus&PemphigoidFoundation �

There was an informal meeting of the Pittsburgh, PA Support Group

in February 2007. The meeting was held at the oncology center of a local hospital. As always, it was good to see how well people are doing and getting on with their lives in different ways, This meeting was especially special because the nurse who knew me from a hundred IVIg infusions at Allegheny General Hospital - and who diagnosed Gloria’s pemphigus in 2005 literally saving her life – was there. It was amazing to see Gloria and Nurse Denise together in such a laid back way. Lesson learned: One person can definitely make a difference!

There are no current plans for future meetings. If you are interested, please contact me and I will get back to you as soon as possible.

Terry Wolinsky McDonald, PhD (412) 421-1300

I WANT THE QUARTERLY! Copy or cut out this form, print clearly, and return with your donation to:

IPPF • 1540 River Park Drive, Suite 208 • Sacramento CA 95815

o I have enclosed my tax-deductable donation of $50.00.

o I am under financial hardship. I have my enclosed $_______.

Payment (Do not send cash): o Check o Visa o MasterCardCard #: __ __ __ __ - __ __ __ __ - __ __ __ __ - __ __ __ __ Expiration Date: __ __ /__ __Signature (REQUIRED): ___________________________________Printed Name: _________________________ Date: __________Address: ____________________________________ Telephone: _________________State/Province: _________ Country: __________Postal Code: ______ Email: ____________________________________________

The IPPF......Bridging the gap between you and current information

S u p p o r t • W h a t ' s N e w • H o w t o H e l p • W h e r e t o G o

PEM Friends Continues to Bring UK Patients Together

PA Meeting a Recipie for Success

Local Support Groups in the NewsLocal Support Groups Do Make a Difference! Contact the IPPF for more information about starting a group in your area at info@pemphigus.org

February marked

Gloria’s Health Smart Recipe

¼ cup sunflower seed¼ cup oatmeal1 T flax seed1 T Lecithin1 T wheat germ2 cups Soy Milk (Silk)1-2 bananas

First put all dry ingredients in the blender and blend. Remove dry ingredients.

Put in 2 cups of Soy Milk plus banana and blend.

While blending, slowly add in dry ingredients. If you want to you can add a second banana.

10 ThePemphigusQuarterly•Spring�007

arrive calm or an agitated nervous wreck. I find deep breathing and neck/ shoulder relaxation exercises very easy to do in the car. Soft music can also help. Some people enjoy books on tape.

How you choose to live affects the quality of your own life, of course, but it also affects the quality of life of those closest to you. It is not always a matter of the glass being half empty or half full; sometimes it is just a glass with water in it. Some days will be better than others, and none of us, even with the same disease, have identical symp-toms or pain thresholds. Remember that most people are afraid of change, even positive change. Changes can certainly be viewed as threatening, or they can be viewed as challenges and opportunities. The scenario is a matter of choice.

Positive growth will always come from working from your strengths. Iden-tifying weaknesses and problem areas is important in creating goals, but you will need to identify your strengths (including any support systems) in order to achieve those goals. Your strengths (e.g., intel-ligence, persistence, support system, etc.) will aid in coping with anxiety, mood changes, the symptoms of the illness and negative medication side effects. With new coping skills, adaptations, and relaxation techniques (deep dia-phragmatic breathing, imagery, etc.) you can break the cycle of a downward spiral and adapt to the ongoing and unpredictable changes you are facing in your life.

If you are not already in some kind of counseling or therapy, or even if you are, you can make up your own” treat-ment plan”. You will need to make five columns. Identify at least three prior-

ity problem areas in your life. This will depend on your own symptoms and situation and also that of others in your life. In the second column, write down your long-term goals. In the third column, state measurable short term goals. For example, “I will make at least two positive self-statements every day” would be reasonable if you are having a lot of negative self- thoughts. If you are isolating yourself, “I will have social contact at least 3 days/week” may be reasonable for you. In the fourth column you will write how you plan to make positive progress toward your goals. Will psychotropic medications, or at least a psychiatric evaluation, be part of how you intend to reach your goal? Will you read certain books or use self-help workbooks to help you better understand cognitive distortions and cognitive psychology? ( If you do choose a self-help workbook, the ones

by David Burns are excellent and very understandable.) In the fifth column you will put an estimated date by which you hope to achieve the short term goals. Psycholo-gists generally redo treatment plans every six months or more frequently. And, remember that these goals are not written in concrete. Your problem areas and goals may change by time and/ or unex-

pected changes in your life. Having a plan that is reasonable and allows posi-tive completion of the short term goals is helpful in giving you more control in your life. Once you successfully achieve a goal you can concentrate on the oth-ers, or you can add a new short term goal. Again, there are a lot of choices here.

Some areas which may be af-fected include: Increased stress levels; concentration problems; decreased self-esteem; increased worry and

high anxiety, and feeling isolated and misunderstood. Some people close to you may complain that YOU com-plain all the time, while you are think-ing “If they only knew the things I am keeping inside. . .” These are probably the things to talk to a professional about- psychologist, licensed therapist, counselor, or spiritual counselor. There are always problems we feel we have put to rest long ago, but now they may be brought to the forefront. In therapy (usually in conjunction with an antidepressant or a combination of antidepressants prescribed by a family doctor or psychiatrist) you can freely talk, vent, cry, ask questions, or other-wise express feelings in a nonjudgmen-tal and trusting environment with a professional who is LISTENING TO YOU. You will learn to pace yourself, rational (versus emotional of distorted thinking), how to live a proactive and fulfilling life, relaxation methods, and positive and personalized coping strategies. And, don’t forget to exercise – even if this just means stretching a couple of times a day or going up and down the steps a few times. You can do push ups. You may start with one or two (on the knees for women), but you will be surprised at how quickly you will gain strength. You are not training for a marathon (At least most of us are not.), but you will want to try to not lose flex-ibility or strength even if you are not interested in gaining strength.

Coming to terms with your illness won’t happen overnight, but learning and using positive coping/ relaxation techniques can be learned quickly and utilized often. Coming to terms with the uncertainty of life changes brought on by chronic illness will challenge you to be proactive and to use the cogni-tive skills all humans have. You will be more resilient regarding your treatment and in WAITING for doctors, tests, test results, hospital registrations, prescrip-tions, answers. . . Instead of getting perturbed by waiting for others, PLAN around the known and be ready for surprises. You may find you have a lot more control as you come to terms with your illness and yourself. •

...continued from LOSS OF CONTROL, page �

InternationalPemphigus&PemphigoidFoundation 11

The 2006 Patient/Doctor Meeting was a tremendous success. The following are some of the questions and

answers from the meeting held September 16-17 at New York University's College of Dentistry's Saklad Auditorium in New York City.

Q. I have a high ELISA Dsg 3 score, but no disease activ-ity? Is a titer test of ELISA test really indicative of disease activity?A. It might that some antibodies might not be pathogenic. These tests can be useful though in measuring disease activity in some people.

Q. How do you manage a team of doctors?A. It can be difficult. You need a good Internist to help “quarter-back” for you. Often with pemphigus/pemphigoid, the Derma-tologist is the main physician. But, each physician taking care of you should know what others are doing.

Q. Permanency of long-term remission?A. Over time, the vast majority of patients will go into remission for at least 10 years.

Q. Does PV always need systemic treatment?A. Although every person is different, systemic treatments are al-most always used. We know prior to 1950 mortality rate was 50% after 2 years, and 95% by 5 years. The earlier you intervene, the disease a better chance for remission. However, there are patients who have such mild disease (a small number) because the disease might be localized or very minor. As soon as expansion of disease, steroids should be given.

Q. How do you know the best way to treat the disease?A. Must treat the disease aggressively from the beginning to try and get totally clearing. Some doctors like the use of steroid-spar-

ing drugs to help get the disease under control and into remission faster.

Q. How often should patients be seen?A. It needs to be tailored to individual. If a patient has severe dis-ease, doctors might see a patient once a week. As a patient gets better, the visits would tend to be reduced. Although treatment protocols could drive the number of visits.

Q. If a patient is in remission should you continue to have a titer test?A. It is important to just manage the disease. Generally speak-ing there is a correlation between disease activity and titer count. What is really important is whether there is evidence of the disease not whether there are antibodies present.

Q. If a patient is doing well on 5 mg of prednisone, at what stage do you continue to taper the medication?A. There is a split in decision. Some believe that because pemphigus is a chronic disease, you should stay on a small dose forever. Some believe that it is possible to stop all medication. Each doctor has a different strategy, but it can be a personal deci-sion depending on activity.

Q. Does bodyweight factor in to dose?A. Yes. It is widely believed that dose should be 1 mg to 1 kilo-gram of body weight for both steroids and immunosuppressives.

Q. What is the mean age of the disease?A. Mean age of pemphigus in Iran, Pakistan, and China, the aver-age age is around 19. In the U.S., it is usually higher but it is being diagnosed in young adults.

Q. What should be the average time to diagnose the dis-ease?A. Because pemphigus lesions can look like other lesions, and it is rare, average diagnosis time is months, not weeks. •

2006 Annual Patient/Doctor Meeting Q&A

Above-Drs.RazzaqueAhmed(CenterforBlisteringDiseases),GrantAnhalt(JohnsHopkinsUniversity),andVictoriaWerth(UniversityofPensylvania)answerquestionsforattendeesduringoneoftheQ&Asessions.

Right-Dr.Jean-ClaudeBystryn(NewYorkUniversity)respondstoapatient'squestion.

1� ThePemphigusQuarterly•Spring�007

by Will Zrnchik

The following Q&A originat-

ed as an alert re-garding a "phish-ing" scam posing as the US Social Security Admin-istration. The actual SSA release can be viewed at http://www.ssa.gov/pressoffice/pr/colaPhishingScam-pr.htm.

Question: I'm a senior and got an email yesterday from the Social Security Administration that says if I don't respond by tomorrow, I'll stop receiving Social Security! Is this a scam??

Answer: Yes, it's a scam. In Novem-ber, the Social Security Admin-istration issued a security alert about a new phishing scam aimed at seniors.

The subject line of this supposed Social Security Administration email is: Cost-of-Living for 2007 update. The email claims its purpose is to inform Social Security recipients about the 3.3% Social Security benefit increase for 2007. It also contains the following statement: "NOTE: We now need you to update your personal information. If this is not completed by [a date close to today's date], we will be forced to suspend your account indefinitely."

The recipient is then directed to a bogus phishing website that is de-signed to look like the Social Security Administration's website.

At the phishing website, victims are asked to create a password and to confirm their identity by providing their Social Security number, credit card information and bank account informa-tion.

Action: Delete the email. DO NOT visit the website. Recognize that the

Social Security Administration does not send out emails that require you to give out your personal information, nor do they use scare tactics and short deadlines via email to pressure you to update your account.

(Source: scambusters.com)

But what is phishing? Computer hackers commonly

replace letters with others to show they are “going against the system” such as replacing the letter “o” with zeros (e.g., d00d = dude) or “s” with “z” (e.g., codez = codes). That said, “phishing” is “fishing” for information. The term originated around 1996 when hack-ers were scamming America Online® customers out of their passwords and stealing their accounts. Phished ac-counts (hacked accounts) were traded among hackers as currency. Hackers would trade a dozen hacked AOL® accounts for some hacking software. These accounts were most commonly used for hosting illegal downloads like music, software, and games – three of the hackers most prized possessions.

Times have changed and the intent is no longer just for malicious fun. There are still chain letters out there asking for your money or assistance in settling a will or estate, but now criminals are going after big bucks and you are the target. Criminals have figured out that by creat-ing websites that look like legitimate companies and

banks people will provide almost any information requested of them.

As a rule of thumb NO SITES, BANKS, OR COMPANIES will ask for your account information…they al-ready know it. If something is out of the norm then check it out. One way is to go directly to the website in question. DO NOT USE ANY LINKS IN THE SUSPI-CIOUS EMAIL. If it is from PayPal® then go to paypal.com. If it is from your bank go to your bank’s website. From there locate the Contact Us section and send them an email or call them to ask your questions.

Here are some sites I use to de-bunk or verify scams. Snopes.com is a good site to see about urban leg-ends and scams (www.snopes.com). Scambusters.org is a watchdog group that helps Internet users avoid scams (www.scambusters.org). PhishingInfo.org is an informational site to educate Internet users on phishing scams and what to do if you think you have been scammed (www.phishinginfo.org).

If you have any questions about scams I recommend asking the legiti-mate site’s Customer Service depart-ment, researching it online, or emailing me at will@pemphigus.org. •

Beware of Internet Scams

WillZrnchik

InternationalPemphigus&PemphigoidFoundation 1�

AlAbAmA_________________________________________Enterprise . . . . . . . . . . . . . .Ann Sconyers . . . . . . . . . . . . . . . 334-347-0919

AlAskA___________________________________________Anchorage. . . . . . . . . . . . . .Jim & Scottie Cikanek . . . . . . . . 907-243-3260 . . . . . . . . . . . . . .cikanek@gci.net

ArizonA__________________________________________Tucson . . . . . . . . . . . . . . . . .Sloan Stevens . . . . . . . . . . . . . . . 520-514-1343

CAliforniA_______________________________________LA Support Group .......... Lynn Glick ...............................310-559-56�2 ................lynntg@prodigy.netSac Support Group ......... Sarah McClellan ......................916-�96-08�0 .......... mccolesteve@msn.comAgorura Hills . . . . . . . . . . . .Barb Roller. . . . . . . . . . . . . . . . . . 818-991-6569. . barbara-roller@sbcglobal.netArroyo Grande. . . . . . . . . . . Ted Schepp (BP) . . . . . . . . . . . . 805-481-5581. . . . . . . . . teddy-milehi@att.netChino . . . . . . . . . . . . . . . . . .Sandra Rose . . . . . . . . . . . . . . . . 909-591-1496 . . . . . . . . . .ybarose@verizon.netEl Cajon . . . . . . . . . . . . . . . .Roy DeViso . . . . . . . . . . . . . . . . . 619-588-9220. . . . . . . . . . . . roynmo@attg.netFresno . . . . . . . . . . . . . . . . .Sheila Weyant. . . . . . . . . . . . . . . 559-292-4607. . . . . . . . . . . .s.j.weyant@att.netIrvine . . . . . . . . . . . . . . . . . .Fariba Vadpey . . . . . . . . . . . . . . . 949-863-9798 . . . .shahram.vadpey@cox.nettJamestown . . . . . . . . . . . . .Loretta Weatherill . . . . . . . . . . . . . . . . . . . . . . . . . . . dachshundstwo1@juno.comLong Beach . . . . . . . . . . . . .Sonia Tramel . . . . . . . . . . . . . . . . 562-430-9472 . . . . . . stramel@speakeasy.netMission Veijo. . . . . . . . . . . .Sima Ghofranian (Farsi). . . . . . . 949-859-4356 sima_ghofranian@yahoo.comRancho Cucamonga . . . . . .Gregory Wright . . . . . . . . . . . . . 909-899-6883 . . . . . pittfan723@hotmail.comSacramento. . . . . . . . . . . . .Amy Granat (Hebrew) . . . . . . . . 916-775-4744. . . . . . . . . . ajgranat@citlink.netTehachapi . . . . . . . . . . . . . .Lillie Swanson. . . . . . . . . . . . . . . 661-821-2224 . . . . . .sewingal@lightspeed.net

ColorAdo________________________________________Denver . . . . . . . . . . . . . . . . .Esther Lustig. . . . . . . . . . . . . . . . 303-773-6205

floridA_ _________________________________________FL Support Group ............ Marcia Pepper (Dec-Apr) .........561-�96-195�............. hotpep1221@aol.comBoca Raton . . . . . . . . . . . . .Linda Tafet (Oct-May) . . . . . . . . 561-451-2947 . . . . . . . . . . . . lin2124@aol.comGainsville . . . . . . . . . . . . . . .Athena Davidson . . . . . . . . . . . . 352-378-4864Pensacola . . . . . . . Kevin Swanger (MMP-speaks Russian) 850-433-9872 . . . . . . .kevinswanger@cox.netStuart . . . . . . . . . . . . . . . . . .Nancy Jennings . . . . . . . . . . . . . 772-220-4505 . . . . . .abbott27@bellsouth.netTallahassee . . . . . . . . . . . . .Lee Kotick . . . . . . . . . . . . . . . . . . 850-893-5538. . . . . . . .d281944@comcast.net

GeorGiA__________________________________________Augusta . . . . . . . . . . . . . . . .Elizabeth McLendon . . . . . . . . . 706-650-2715. . . . . . amclendon@knology.netGainsville . . . . . . . . . . . . . . .Cecelia Espinosa Murphy. . . . . . 770-532-1636 . . . . . . . . . . . . . (speaks Spanish)Powder Springs . . . . . . . . .Jody George . . . . . . . . . . . . . . . . 678-657-9414. . . . . . . . . wajogeorge@aol.com

illinois_ _________________________________________Chicago . . . . . . . . . . . . . . . .Ed Tenner. . . . . . . . . . . . . . . . . . . 847-251-9375 . . . . . . . . . . . eyekon20@aol.com

kentuCky_ _______________________________________Louisville . . . . . . . . . . . . . . .Madeline Stempkovski . . . . . . . 502-538-6997. . mstempkovski@hotmail.com

mArylAnd_ ______________________________________Baltimore. . . . . . . . . . . . . . .Erica Byrne . . . . . . . . . . . . . . . . . 410-750-1618 . . . . . . . . .brynete@comcast.netBaltimore. . . . . . . . . . . . . . .Elaine Guice. . . . . . . . . . . . . . . . . 410-477-9445Baltimore. . . . . . . . . . . . . . .Carol Rubenstein . . . . . . . . . . . . 410-484-6778 . . . . . . carolruby@comcast.net

mAssAChusetts__________________________________Boston Support Group .... Alan Papert ............................9�8-�63-0965 ............... alppy@comcast.netBoston . . . . . . . . . . . . . . . . .Carol Fischman . . . . . . . . . . . . . . 617-964-0826. . . . . . mrmrsfish@comcast.netTaunton . . . . . . . . . . . . . . . .Jeff Perry . . . . . . . . . . . . . . . . . . . 508-828-1386. . . . . . . . . . fredgs@comcast.net

miChiGAn_ _______________________________________Flint . . . . . . . . . . . . . . . . . . .Lois Stanley . . . . . . . . . . . . . . . . . 810-732-7147 . . . . . . . . .lmstanley35@aol.comRockford . . . . . . . . . . . . . . .Joe & Elaine Rothenthaler . . . . . 616-866-8402 . . . . . . . . ejroth@chartermi.net

minnesotA_______________________________________St Paul . . . . . . . . . . . . . . . . .Dylan McIntosh (MMP) . . . . . . . 651-438-9292. . . . . dkmcintosh1@mmm.com

nevAdA_ _________________________________________Vegas Support Group ..... Cherie Jacobson ......................�02-�56-0150 .. cherdon19�2@earthlink.netLas Vegas. . . . . . . . . . . . . . .Bev Siegel . . . . . . . . . . . . . . . . . . 702-656 -9998 . . . . . . . . . . . . jabbs39@att.net

new_Jersey_______________________________________Rochelle Park . . . . . . . . . . .Skip Van Lenten . . . . . . . . . . . . . 201-406-3933. . . . . . . . . . . . .pvskip2@aol.comW Orange . . . . . . . . . . . . . .Hannah Lisa Reade. . . . . . . . . . . 973-736-1253

new_york_ _______________________________________NY Support Group ........... Matt Koenig............................516-825-�59� ................. mattkoe@aol.comBrooklyn . . . . . . . . . . . . . . .Marcia Pepper (May-Nov). . . . . 718-946-0927 . . . . . . . . hotpep1221@aol.comBrooklyn . . . . . . . . . . . . . . .Miriam Weiss . . . . . . . . . . . . . . . 718-332-2681 . . . . . . . . . Cyberbobby@aol.comDobbs Ferry . . . . . . . . . . . . .Sandra Feldstein. . . . . . . . . . . . . 914-693-1157 . . . . . . . sanherb@optonline.netLI/Suffolk Cty . . . . . . . . . . .Lisa Levine. . . . . . . . . . . . . . . . . . 631-979-5856New York . . . . . . . . . . . . . . .Barry KRatz . . . . . . . . . . . . . . . . . 914-723-3698. . . . . . . .barry@vsrsystems.com

north_CArolinA_ ________________________________Chapel Hill . . . . . . . . . . . . . .Erin Pias Hines . . . . . . . . . . . . . . 919-942-8781. . . . . . . .acaspase3@yahoo.com

ohio_ ____________________________________________OH Support Group .......... Gina Panico .................................................. ginapanico@columbus.rr.comCleveland. . . . . . . . . . . . . . .Roz Cameron. . . . . . . . . . . . . . . . 216-896-0952Dearborn . . . . . . . . . . . . . . .David Bazzy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . cbazzy@aol.comToledo . . . . . . . . . . . . . . . . .Dorothy Strayer. . . . . . . . . . . . . . 419-874-5696

oreGon_ _________________________________________Oregon City . . . . . . . . . . . . .Nancy Earp . . . . . . . . . . . . . . . . . 503-650-0962 . . . . . . . . stealthlady1@aol.com

PennsylvAnniA_ _________________________________Pittsburgh Support Grp .. Terry McDonald, Ph.D. .............�12-�21-1300 (office)....... tmcdii2@msn.comErdenheim. . . . . . . . . . . . . .Stan Schwartz . . . . . . . . . . . . . . 215-233-5085. . . . . . . . . . . . . . . stanls@att.netKing of Prussia . . . . . . . . . . .Gregory Davis . . . . . . . . . . . . . . . 610-337-8293 . . . . . . . . . . gdaviskop@aol.comNorristown . . . . . . . . . . . . .Gary Sweetman . . . . . . . . . . . . . 610-272-6043Croydon (Philladelphia). . .Sue Carpenter (MMP) . . . . . . . . 215-785-1238 . . . . . . . . . . . .susirecar@aol.comWarren. . . . . . . . . . . . . . . . .Betty Mailhot . . . . . . . . . . . . . . . 814-726-3612 . . . . . . . . . . pbshcr@kinzua.nett

rhode_islAnd____________________________________Hope Valley . . . . . . . . . . . . .Yvette Nachmias Baeu. . . . . . . . 401-539-9827. . . . . prestigedefrance@cox.net

south_CArolinA_ ________________________________SC Support Group ........... Cheryl Jordon......86�-683-2029 / 86�-386-1620 (cell).. rzlaanuw@aol.com

texAs_ ___________________________________________Dallas Support Group ..... Joyce Korn ..............................21�-�39-1�85 ....................hlkorn@flash.netDallas . . . . . . . . . . . . . . . . . .Karen Tellez (MMP) . . . . . . . . . . 817-281-3739 . . . . . . . . . . . textell@charter.netHouston. . . . . . . . . . . . . . . .Richard M. Schwartz . . . . . . . . . 713-723-5647. . . . . . . . . richardm@hal-pc.orgHouston. . . . . . . . . . . . . . . .Asha Babooram . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .ashatrini@hotmail.com

utAh_ ____________________________________________Salt Lake City . . . . . . . . . . . .Matt Cole. . . . . . . . . . . . . . . . . . . 801-546-2507. . . . . . . . . .matt@bachkohl.com

virGiniA__________________________________________Petersburg. . . . . . . . . . . . . .Lynne Stanley . . . . . . . . . . .804-733-3696 . lstanley@prestigeconstruction.com Virginia Beach . . . . . . . . . . .Betty Burke . . . . . . . . . . . . . . . . . 757-427-9414 . . . . . . . . . . . .bob-bett@cox.net

wAshinGton_ ____________________________________Kennewick. . . . . . . . . . . . . .Caroline Patnode . . . . . . . . . . . . 509-588-4064 . . . . . . . . . . . cp1353@msn.com

wisConsin_ ______________________________________Eau Claire. . . . . . . . . . . . . . .Joanne Palzkill . . . . . . . . . . . . . . 715-835-2209. . . . . . joanne@draganettis.com

wyominG_________________________________________Cheyenne. . . . . . . . . . . . . . .Brenda Schulz . . . . . . . . . . . . . . . 307-632-2901 . . . . . . . . . gbschulzgo@aol.comNewcastle . . . . . . . . . . . . . .Donna Bunch . . . . . . . . . . . . . . . 307-746-4108 . . . . . . . . .dlbunch@tribcsp.com

AustrAliA________________________________________Booragoon . . . . . . . . . . . . .Julian Chan . . . . . . . . . . . . . . . . . 08-9316-1787 . . . . . julian.chan@bigpond.com

CAnAdA_ _________________________________________Beaumont . . . . . . . . . . . . . .Graciela Mandeville . . . . . . . . . . . 780-929-8981 . . . . . lloydman@connect.ab.caOntario. . . . . . . . . . . . . . . . .Victoria Carlan . . . . . . . . . . . . . . 613-866-8706. . . . . . . . . . . . . . . . . vec@istar.caOntario. . . . . . . . . . . . . . . . .Val Carvalho . . . . . . . . . . . . . . . . 416-734-1510 . . . . . . . . ragalorn@hotmail.comOntario. . . . . . . . . . . . . . . . .Kazi Alamgir Hossain . . . . . . . . . 416-297-0461 . . . . . . . . . aljo2288@yahoo.comToronto . . . . . . . . . . . . . . . .Zaibeen Ismail (PF) . . . . . . . . . . 416-226-2085. . . . . . . . zaibeen@sympatico.caToronto . . . . . . . . . . . . . . . .Dan Goodwill . . . . . . . . . . . . . . . 416-488-0453 . . . . . dan.goodwill@primus.caVictoria . . . . . . . . . . . . . . . .Darryl Farquhar. . . . . . . . . . . . . . 250-474-4741. . . . . . . . . . . . . dgfarq@shaw.ca

ChinA_ ___________________________________________Hong Kong . . . . . . . . . . . . .Ming Kwong . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . mingkwong@hotmail.com

enGlAnd_________________________________________PEM Friends .................. Carolyn Blain, JD .....................�� 161 3�3 �100 .... carolynblain��@hotmailPV Network .................... www.pemphigus.org.uk.........020 8630 6�62Leads (Yorkshire) . . . . . . . .Arline Hayman . . . . . . . . . . . . . 07885 894849 . tributes@ctlmanagement.co.ukLondon . . . . . . . . . . . . . . . .Isobel Davies (MMP) . . . . . . 440 1296 713214. . .isobel_davies@dial.pipex.com

frAnCe___________________________________________France Support Group .... Josée de Felice.........................01 60 �2 18 �3 .......... felice@paris�.jussieu.frFrance Support Group .... Isabelle Gentile .......................02 23 96 39 21 .................... ifgentile@free.frParis . . . . . . . . . . . . . . . . . . .Peter Foldes . . . . . . . . . . . . . . . . 01-47-32-4205 . . . . . . . . peterfoldes@tiscali.fr

mAuritius________________________________________Pl Ds Papayes . . . . . . . . . . . Sunil Toolsee . . . . . . . . . . . . . . . 230-773-1149 . . . . . . . . sunil1902@yahoo.com

mexiCo___________________________________________Aguascalientes . . . . . . . . . .Gilberto Aguirre . . . . . . . . . . . . . 449-917-1716 . . . . . gaguirre2@infosel.net.mx

sCotlAnd_ _______________________________________Edinburgh . . . . . . . . . . . . . .Clare Cameron . . . . . . . . . . . . . . 1368 860530 . . . . . . clarecam55@hotmail.com

iberiAn_PeninsulA_ ______________________________ . . . . . . . . . . . . . . . . . . . . . . .Richard J. Labrador . . . . . . . . . . 350-49030. . . . . . . . . . . claim@gibtelecom.net

isrAel____________________________________________Haifa. . . . . . . . . . . . . . . . . . .Victor Leikehman . . . . . . . . . . . . 04-993-1117 . . . . . . . . . . .victorlei@yahoo.com

itAly_ ____________________________________________Support Group (Rome) ... Anna Lisa Riccardi ............................................................... alz�6@yahoo.it

new_zeAlAnd_____________________________________Nelson . . . . . . . . . . . . . . . . .Gloria Romano . . . . . . . . . . . . . . P. O. Box 1051, Nelson, New Zealand

netherlAnds_ ___________________________________www.pemphigus.nl ....... Hermien Konings..........0031 512 53�812 ........... hermienkonings@planet.nl

PhilliPPinesPI Support Group ........... Dr. Benjamin Bince .................632-�11-6��0 .................. bbin@runbox.com

The IPPF Support Network Heart2Heart Volunteers and Local Support Groups are there for you. Contact our offices if you would like to be a volunteer in your area.

1� ThePemphigusQuarterly•Spring�007

The International Pemphigus & Pemphigoid Foundation would like to thank everyone for their support and contri-

butions over the past year. Your help has been overwhelm-ing and the Foundation would not be where we are today without your generosity.

The IPPF Growth Campaign was a huge success. Our

generous PATHFINDERS matched donations dollar for dollar and together we raised over $65,000! This money will be used for research, support, and advocacy to help patients, caregivers, and families as we continue to search for a cure.

We cannot express how much we here at the Foundation are grateful for your support...THANK YOU!

CORPORATE DONORS & SPONSORSAspreva Pharmaceutical CorpCentric Health Resources, Inc.Crescent Healthcare, Inc.Midwest Textile Association

(inhonorofDavidBaron)Nicusa Investment Advisors LLCPrompt Care Inc.TalecrisZLB Behring L.L.C.

GRAND BENEFACTORS ($5,000+)Sam DombFuchsberg Family FoundationHoward & Mindy UngerZimmerman Family Foundation

BENEFACTORS ($1,000-$4,999)A. Razzaque Ahmed, M.D.David & Cherie BazzyBernard & Toby Nassbaum

FoundationJean-Claude Bystryn, M.D.Frank & Lucia DarcoFar East Brokers & Consultants, Inc.Russell Hall, III. M.D.Lee HeinsDavid IsraeliteElliott KahnPhyllis KesslerNeil Korman. M.D.Leonard & Arleen KratzAlan LivingstonFrances MeadowsJonathan MichaeliNayana & Jag PatelMarvin & June RogulRichard RoismanDavid Sirois, D.M.D., Ph.D.John Stanley, M.D.Wendy StasoRobert Swerlick, M.D.Marcy SymsThe Honorable Janice A. TaylorWalter & Avis TaylorEdward & Karen TennerTuscanooga Baptist Church

SPONSORS ($500-$999)Grant Anhalt, M.DKirsten BellurHenry BranscomeMarjorie Freilich-DenPaul GoldmanSharon GordonNoor & Kuntie HassoBrian Kaufman, M.D.Casey KochevarHoward & Joyce KornBetty MacGregorDedee Murrell, M.D. Ron PludeAlan PruzanMichael & Karen Rosengarten

Marvin & Claire RosengartenBernice SchroederRichard SchwartzStanley & Joan SchwartzJoel & Ellen ShapiroEdward & Lillie SwansonLionel TeicherAndrew Van Der PollJ. Gregory Wright, M.B.A.Fred & Cathey Youngswick

PATRONS ($100-$499)Marilyn AbelRebecca Albrecht-OlingHope Albrect-KleinCynthia AlexanderMasayuki Amagai, M.D, Ph.D.Danielle AnelloEsfira AnnenbergBetty BarnardSusan BendellEli Ben-DorScott & Linda BergerPeter BlumbergDoug & Annette BohannonLorraine BoyleDolly BrickmanW. ByrneSusan Cohen ByrneJeffrey CallenCharles CamisaJulian ChanMalathy ChandrasekharLucille CiceroJack CohenAliza CohenMark Dahl, M.D.Peter DanlyDavid DarrowAnthony & Pearly DavidElsie DeaconSona DennisTony Di MeoNancy DimeoRichard DukesSheila & Peter DurfeeRahm DvirVeronica EadsWilliam EatonJay EllerMark EllisJoan ErnstJohn Fantasia, D.D.S.Jeffrey FeingoldEileen FeldmanGary FentressDavid Fivenson, M.D.Tom & Catherine FoleyDavid FortunatoCorrinne FosterSandra FrankEleanor GarnerShelley GarridoHoward & Julie GershKen GinLynn GlickJoel & Linda GluckAndrew GoldwynBob Gouin

Louise GouldJean GraberLois GregoryHeather HallTakashi HashimotoDebbie HaupertMartin Hauptman, M.D.Barbara HeeSharon HickeyLeahbelle HillPeter HilsenrathMargaret IannielloDon IsaacsonMary JacksonDavid Jacobus, M.D.Thomas JonesMarcel Jonkman, M.D.Robert Jordon, M.D.Robert JostesPaul JudsonJohn JuergensJoseph Kanarek, M.D.Lewis & Sandra KanengiserFrancisco Kerdel, M.D.Jin KimAllen & Betty KimballMary KirsteinReuben KoolykMilan KosanovichLee KotickBarry KratzSolomon & Patty KurzMing KwongJames LederDavid LeventhalDaniel Levine, C.P.A., P.C.Fernando LopezDwight MagalisPamela MaininiMaria MakowieckaPeter MannherzJames & Cheryl MarpleLori MarracinoJoya MartinMartin & Debra MasonChristina MatalonF. J. McCarthyLinda McCrearyJulie McKeeverDon MeyersonJoan MillerRichard & Patricia MilleticsGinat Mirowski, M.D.John MonahanJanice MoskowitzDaniel PaganoAmit Pandya, M.D.Alan & Gloria PapertJay Parmar, M.D.Dharmista PatelWilliam & Geraldine PaulsPeter PetersonJim RandallJohn & Jeannette RedingGreg & Magda RobertsBetty RobertsNick RodesMaria RodriguezGary & Barbara Roller

Domenick RomeoJennie RomeroSandra RoseArthur RosengartenMargaret & Ted RothschildJoseph RuffinoMary Ellen RusnovJane RyanAnthony & Ann SantoroMarie ScalaSusan SchiefelbeinCraig SchlossbergBill & Isobel SchultzDavid Mark SchwartzGeraldine SchwartzJames Sciubba, D.D.S.Andrea & David SegallHelen SegallJody SeligmanTherese SelimAdoph SeltzerAngelina SelvaggioRichard ShaikewitzAlan ShotkinSam SicoliManuela SilvaM. O. SkeltonMyra SlachetkaEllen SlassJoel SmasonMarilynn SmithDiane SmithSusan SmithAlbert SmithTeresa SmithMonroe SonnenbornBonnie SteinSloan StevensPhilomena StraboliNorman & Linda TafetWalter TasemSylvia TolmanPaula TomeiJay & Elaine TurnerFrank VargasHerb VelazquezLionel & Margaret VieiraAlice VoytovichChi VuElizabeth WeinrebVictoria WerthRose WhiteCarol WilkersonAlice WilkieCarole WillisArlene WolkWallace WolmanAmy WoodardDavid WoodleyRoberta Wool, Ph.D.Irene WyllieEva YachnesKim YanceyRachel YoungrenElizabeth ZackheimDr. Esther ZaretDavid ZaretRichard & Lucy ZaslowToby Zucker

Thank You to our 2006 Donors & Sponsors

InternationalPemphigus&PemphigoidFoundation 1�

FRIENDS (up to $99)Seppo AarnosJennifer AlexanderNannette AlonsoIda & Nazarene AngeliniFarideh AssadiBernice BamberMary BargerRobert BarishDavid BaronLynn BearMarla BeesonBeverly BellLarry BennettPola BerggrunJennifer BienstockSidney BlumCynthia BlumMadeline BonasiaF.E. BookerTerri BranchJody BredfeldJonathan & Beth BrodyTerrence & Donna BuckleyDonna BunchPaul BurkeCathy BurnsBuddy BurnsAlberto & Barbara CamachoJoe & Louise CangelosiJames & Jeya Carmichael, Jr.Frances CarnrightDorothy CarpenterAudrey CavinessMike ChangJohn ChiazzaRon ChriscoDoris CoffmanRalph CoganCharles CohenRonald CohenKaren ColstonGeraldine CopleyJohn CortezBarbara CraneMary CrapanzanoLouis CrespoVincent CrisantiChristopher Crotty, M.D.Carol DaneDan & Joan DeLucieJohn & Patricia DeSmidtMichael DeStefanoRoy DeVisoMarie DippoldDonald DragovichOra DromiRenate EadsMarilyn EagleHyman EidusonLois EliasonLeslie EvansCarolyn EvilsizorRachel FagenMichael FarrerLeonard FeingoldJill FeinsteinWilliam FenaDavid FishmanPhyllis FormanHarold ForrestEvelyn FreemanJanice FrezelSandra FrydaBarbara FuttermanLeslie GarrisLois GauruderBarbara GersonNessa GibbardoLori GieseSandra GittlenMartin GoldmanConnie GolightlyHarold GoodwinCarol GorenBertha Graham

Rachel GrossNikolaus GrunertJoseph GwerderSteven Hacker, M.D.Alice HammelJohn HamnettAmy HananStanley HaraKaren HardestyJill HarrisJune HauerBarry & Cynthia HershElizabeth HilliJan & Herb HillmanHerb & Jan HillmanHans-Joachim HirschGreg HirshAlice HortenGloria HouselIrwin & Eve HuppertMarlene ImbesiLena IppolitoGuity JamJessica JollyEva JonesJulius JonesGerald & Carol JoseloffRichard JulianaRichard KaplanCecile KasnerMarcella KelleherMilton & Rose KelmanMatien & Nargis KhalidCarolyn KnightSharon KnisleyMargaret KolarGerald KossorisD. KothariMarilyn KroopJune KuoppalaHoward & Roz KurmanNeil KuvinPatricia LaneIngeborg LarsonDonald LeBoeufElinor LernerCharlotte LesherRose LevinLisa LevineMayer & Pat Levy, Jr.Joyce LichtensteinJonathan LoMonicoPatrick LonerganMary LucasEleanor LustigMarjorie MagnerBetty MailhotHariclia MakoulisKristin MakowskiEstelle ManfrediJohn ManieriDolores MannainErica MathiasKaren McCauleyJoyce McMoranJanice MeltonRobert MerlinDonna MicunJanelle MillerEmily MillerIsabel MintzBeatrice MockusLynda MollesonAntonio & Zron MoranCecilia MurphyPaul & Nancy MurphyHelena MurrayConstance MyckKatherine NakanishiSherry NemmersLee Nesbitt, Jr.Andrea NordellMilton NorstromArlene NovakTheresa OrlandoZulay Oropeza

Nayantara PanchalLynn PashWendy PatitucciBarbara PaxsonElizabeth PeelMorton & Linda PeetlukChristine PepeMaury & Shirley PerlsteinJames PiedrafitaBernard & Naomi PodolskyLorrie PondHarry PovlotskyRobert PoznanskiLoretta PoznickGeorgette PsarakisVenus RastegarShanaz Raza ShariffPeter ReichJim & Judy ReynoldsIrene RichardiShirley RifkindEllen RiggAlvine RobinsonLillian RolonHoward RothBenjamin & Gloria RubensteinCarol RubensteinConrad & Anita SabinJose SalazarRobin SchectmanElaine SchenkermanPatty SchoenfelderMartha SchuckJohn SchusterCathy SchwartzYvette SchwartzLynn SchwarzStacey ShapiroSusan ShareSharon SheaNancy SherShirley ShimizuAdrienne ShleserSteve ShoreLewis ShusterMax & Rhoda SilverbergLillian SkebaDoug & Mardell SmithMaxine SmithAnnette SowaRichard StachurskiCamilla StacyLois StanleyMadeline StempkovskiRobert & Mary StetterSamuel StockmanBetty StricklandElizabeth StuenkelMarion SuggettKevin SwangerCheryl SweetRobert SwezeyMichael TalianchichChristian ThomasArgiro ThomasAnnie ThompsonHank & Gail TinseyCarrie TwitchellCharles ValentiFatima VeljiTheresa VitielloJohn WarfelLisa WeinsteinMarcia WeinsteinBarbara WeinsteinRuth WiesRuth WillnerElke WittenbergArt WolfeEulalia WycoffMartin YasudaRichard ZaffutoKaren ZallenSchania ZelvinPeggy ZimmermanRichard & Marjorie Zitomer

DONATIONS IN HONOR/MEMORYIn Memory of William Allen

Carol DinowAnnie KornfeldMarcy LaKindAlvin & Carol LevineSkip & Carol MoellerJudith PorvinEric & Jennifer RosenbergPaul SchreibermanLisa SchwartzEllen ShermanHarriet StoneHeather Zamora-Hegg

In Memory of Martha CohenRobert Baffa, Jr.Braman Family FoundationGary CohenMark & Susan CohenMichael & Wendy ElkinGary FarbishFaye FerrandoMargaret FussellGerry & Judy GouldBarry HaimanKaufman & Rossin Professional

AssociationBarbara KeyesMichael & Susan KeyesWilliam McCarthyGary & Cynthia McGrawStanley NewmarkJosephine NicastroGloria ScharlinGlenn & Ellen Widom

In Memory of Elaine TannehillPatricia AdamDeborah JacksonTerry McCurdyJohn & Kathy SpencerTiffany Tinsey

In Honor of Kuntie HassoAdmiral Courier Services, Inc.Fred ChillCheryl FeldWieselthier & Melzer, CPA's, P.C.

In Honor of Carol RubensteinSheldon BlackmanBernie & Marsha BondroffRobert BoublitzJack & Dolores CurtisBarbara FinnEtta & Norman FriedmanHoward & Diane GartnerLilya GelmanLouis HoganBeth KosiakJerry KurmanWarren & Janice MorgansteinHenry & Charlotte RechesAlvin RubensteinNorman & Megan RubensteinSylvan RubinLinda SchwartzAllan & Rosalind ShenkerMarty Zayon

In Honor of Toby ZuckerJudith BernsteinCarol SymNancy Zirin

MATCHING GRANTS/GIFTSAmerica's CharitiesBank of America Matching GiftsBaxter International FoundationGoodSearchHP Employee Charitable GivingIllinois Tool Works FoundationKimberly Clark FoundationUnited WayUnited Way of SE PennsylvaniaWellpoint Foundation

1� ThePemphigusQuarterly•Spring�007

Non-ProfitOrganizationUS Postage

PAIDTucson, AZ

Permit No. 271

Donate your car!

If you live in the United States you can donate your vehicles to the International Pemphigus & Pemphigoid Foundation! Your tax-free donation helps us continue to provide services and information to patients, their families, and caregivers around the world.

We will complete the initial paperwork for you!

Call or email us today!

(916) 922-1298

info@pemphigus.org

IPPF Vehicle Donation Program 1540 River Park Drive • Suite 208 • Sacramento CA 95815

Pemphigus &Pemphigoid

INTERNATIONAL

FOUNDATION

1540 River Park Drive • Suite 208 • Sacramento, CA 95815Phone: 916-922-1298 • Fax: 916-922-1458

www.pemphigus.org

The 10th Annual Patient/Doctor Meeting will beSeptember 15-16, 2007 in Toronto, ON, Canada!

Our event planners are busy coordinating guest speakers, hotel discounts, entertainment, and dinner plans as they try and surpass the success of the 2006 meeting in New York! Don't miss out! Registration

forms and information will be included in the SUMMER 2007 issue of the Quarterly!