Boston Support Group Spreads Awareness at YDC

Quarterly
The Quarterly Journal of the International Pemphigus & Pemphigoid Foundation
INTERNATIONAL
Pemphigus &
Pemphigoid
FOUNDATION
a common hope an uncommon bond
www.pemphigus.org
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.
the
the
Spring 2007 • Issue #48
Boston Support Group
Spreads Awareness at YDC
Yankee Dental Conference® 32
In
this
Issue
Ready for
2 Getting
2007
Must Work
3 We
Together!
Treatment
4 AforNew
Recalcitrat PV?
Pemphigus More
5 IsCommon
in Women?
7McDonald
Psychologically
Speaking with Dr.
January 24-28, 2007
Boston, Massachusetts
Perspec8Therapy
Patient
tive: Combo Infusion
Annual Meeting
112006
Q&A
Information You
12Medical
Can Use
Thank You to our 2006
14
Meeting Sponsors and Volunteers
Treatment Shows
15Dual
Promise
continued on page …
Title
Dr. David Sirois, President,
Board of Directors
The Pemphigus Quarterly • Spring 2007
A p ub l ic at ion of t he
I n t e r n at ion a l P e mp higus &
P e mp higoid F ound at ion
BOARD OF DIRECTORS:
President - David A. Sirois, DMD, PhD
Vice President - The Honorable Janice A. Taylor
Secretary-Treasurer - Lee A. Heins
Members - Dan Goodwill; Paul M. Konowitz, MD, FACS; Karen
Means; Marsha Pepper; Sonia Tramel; Terry WolinskyMcDonald, Ph.D.; J. Gregory Wright, MBA
EXECUTIVE DIRECTOR - Janet D. Segall (Interim)
DIRECTOR OF PATIENT SERVICES - Janet D. Segall
OFFICE/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:
1540 River Park Drive • Suite 208 • Sacramento, CA 95815
Phone: 916-922-1298 • Fax: 916-922-1458
pemphigus@pemphigus.org
http://www.pemphigus.org
International Pemphigus & Pemphigoid Foundation The International Pemphigus &
Pemphigoid Foundation is a 501(c)(3)
nonprofit organization.
Title
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
Janet Segall, Interim Executive
Director
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
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& Pemphigoid Foundation. All inquiries
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Park Drive, Suite 208, Sacramento CA 95815.
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The Pemphigus Quarterly • Spring 2007
Rituximab: A New Treatment
for Recalcitrant PV?
by A. Razzaque Ahmed, M.D.
Center for Blistering Diseases
New England Baptist Hospital
Boston, MA
R
ituximab (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 manifestations 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 nonspecific immune suppression. This is the rationale 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 immune 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 infusions. The dose is 375 mg/m2 for each
infusion. The results were variable, but
overall it appeared that 88% of the patients were free of lesions, for at least a
six months follow-up period. Unfortunately, many of the patients were treated 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 infection. Four patients had serious infections 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 producing 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 immunosuppressive 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
Anti-TNF
Therapy
for Mucous
Membrane
Pemphigoid
by Michael P. Heffernan, M.D.
Associate Professor of Dermatology
Div. Chief & Residency Program Dir.
Wright State University, Boonshoft
School of Medicine
M
ucous
Membrane
Pemphigoid, also
known as Cicatricial
Pemphigoid, is a
serious autoimmune
blistering disorder
that can result in
Dr. Michael Heffernan
blindness and other
complications as the result of scarring of
the mucous membranes. To our knowledge, there have been 2 reported uses
of Etanercept for MMP in the literature.
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 important features of this group were that
they all had been treated initially with
Prednisone and other immunosuppressive agents. The mean daily dose of
Prednisone was 125 mg. All had been
treated with mycophenolate morfetil,
10 with azathioprine, 9 with methotrexate and 6 with cyclophosphamide.
Since the patients did not respond
to conventional immunosuppressive therapy, they were subsequently
treated with IVIg. The IVIg was not
totally effective. To augment the effect
of IVIg, Dapsone with methotrexate
continued on page …
In the October and November editions 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. Fortunately, 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 Dermatology 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 treatments for our patients who suffer from
them.
For more information feel free to
contact Dr. Heffernan at michael.heffernan@wright.edu.
•
International Pemphigus & Pemphigoid Foundation Is Pemphigus
More
Common in
Women?
Pemphigus may be Affected
by Hormonal Intake
by Sarah Brenner, M.D.
Department of Dermatology
Tel Aviv-Sourasky Medical Center, and
Tel Aviv University Sackler School of
Medicine, Israel
T
he International
Pemphigus
& Pemphigoid
Foundation recently conducted
a survey for us on
some aspects of
pemphigus, in parProf. Sarah Brenner
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 address the possible reasons. A major factor 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 antiinflammatory and depress
immunity, while estrogens,
the female hormones,
enhance it. The result is
that women have a greater
immune response to external agents. It is known, for
instance, that females are
more prone to develop
autoimmune diseases like
systemic lupus erythematosus (SLE) and multiple
sclerosis, while males tend
to develop lupus later in
life or due to disturbed
hormonal regulation.
Indeed, more than 75% of A recent survey of 249 participatns conducted by Professor Brenner and the
patients with autoimmune IPPF revealed that women might be affected by hormonal intake more than
diseases are women. Thus, men. 151 woman responded along with 91 men for a female:male ration
it is clear that hormonal
of 1.7:1,
make-up renders women
more likely to develop
pemphigus than men.
use of hormonal supplements in 4
A second factor in the preponderout of the 91 men in the survey. The
ance of women among pemphigus
purpose of this hormone intake by
patients is the strikingly high propormen is unknown and has not been
tion of users of hormone replaceaddressed in the medical literature.
ment therapy (HRT) found among
Epidemiological studies are needed to
postmenopausal women. In the survey, assess the extent of this phenomenon
20 of the 43 postmenopausal women
among men, but one can speculate on
were on HRT at the time they devela trend of treatments for male menooped the disease. The immune system
pause (andromenopausa) or anti-aging.
of women is exposed to estrogens in a Does testosterone intake play a role in
number of ways, some internal like the
pemphigus? This finding merits further
natural estrogenic hormones produced study.
in conditions such as pregnancy. But,
We wish to express our special
estrogenic hormones can enter the
thanks to Janet D. Segall, Interim Exbody from outside as well, for medical
ecutive Director and Director of Patient
reasons like replacement therapy and
Services, and Will Zrnchik, Director
contraception, or via environmental
of Development and Communicaagents such as plastics, pesticides,
tions, of the International Pemphigus
plants, and the like.
& Pemphigoid Foundation for conAlmost every second woman after
ducting the survey discussed here.
menopause in the survey was consum- We would like to thank all those who
ing some form of sex hormone. This
answered the survey, and look forward
finding is higher than the 30% figure
to more such service in the future.
for hormone replacement therapy
documented in a 2001 study of all
References
adult women in the United States and
1. Coombs JN, Taylor R, Wilcken N, Fiorica J,
the United Kingdom1. Do these figures
Boyages J. Hormone replacement therapy and breast
argue for the role of hormone supplecancer risk in California. Breast J. 2005;11:410-415.
ments in the disease?
Another interesting finding is the
•
...continued from RITUXIMAB, page was added to the IVIg. The mean duration 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 reduced 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 antibody 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 duration 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 initiation of RTX therapy, we have always obtained clearance from the primary care
physician of the patient. In addition, an
oncologist has evaluated the patients
The Pemphigus Quarterly • Spring 2007
requiring a CT scan of the neck, chest,
abdomen and pelvis to exclude any
existing lymphomas. Evaluation of liver
and kidney functions and the serological tests for various infections was
done. During the RTX therapy, CBC’s,
chemistries, but most importantly,
peripheral blood T & B cells were monitored on a very regular basis. Until the
B cells have returned to normal, monthly 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 believed this was essential to help restore
the immune system to its normal balance. 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 protocol 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-responsive to conventional immunosuppressive therapy and only partially responsive 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 emphasize 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 consequences. Experience with the drug
is limited and additional studies that
must include long- term follow-up are
critical. If you think you are an appropriate candidate for RTX, please speak
to your dermatologist.
Dr. Ahmed can be reached at
arahmedmd@msn.com
•
References
1. 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 lymphomas 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 Spigelman, 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 Mucocutaneous Blistering Diseases. Arch Dermatol. 2003,
Aug;139:1051-1059.
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 accompanying laboratory that focuses on studying molecular
mechanisms in blistering diseases. Dr. Ahmed was a
pioneer in identifying genes that predispose to blistering diseases. He pioneered the use of IVIg in blistering
diseases and singularly negotiated with Medicare in getting national medical coverage for its use. Dr. Ahmed has
worked on blistering diseases for 25 years and authored
over 250 papers on it.
International Pemphigus & Pemphigoid Foundation Psychologically Speaking
with Terry Wolinsky McDonald, Ph.D.
Licensed Clinical Psychologist
Dr. McDonald can be reached at tmcdii2@msn.com
Loss of Control: Your Choice
Coping with Chronic Illness Starts with Acceptance
N
o 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 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 really good; you must be getting better”,
how do you respond? You will want to
explain the disease and its unpredictability 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, depending 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 “absolutely”. 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 transportation, 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 constructively (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 technologically 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
continued on page 10…
The Pemphigus Quarterly • Spring 2007
Combo-Infusion-Therapy
A Promising Treatment
Protocol for Refractory
Pemphigus Foliaceous
by Kirsten R Bellur
A
fter several
misdiagnoses,
I was eventually
correctly diagnosed
with a severe case
of Pemphigus Foliaceous (PF) in July,
1998. Over the next
5 years, I had unsucKirsten R. Bellur
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 reaching 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 immuno-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 participants 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 consecutive 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 immunesystem 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 CellCept®.
I was very encouraged, when I read
the recent article in the New England
Journal of Medicine, entitled “Treatment of Pemphigus Vulgaris with
Rituximab and Intravenous Immune
Globulin”2. I was aware that the Combo-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 experience 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 providers 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 treatments approved.
It has been a struggle to get to
where I am at today. I would never have
been able to achieve it alone. Considerable credit must go to Dr. Marinkovich,
who has patiently helped
me fight my battles to
get approval for the costly but effective ComboInfusion-Therapy.
I hope that by briefly
sharing my experience,
I may in some way embolden other Pemphigus
patients struggling with
years of ineffective or
under-effective drug
therapies to consider
pursuing this very promising combo protocol. I
realize it will only become a “standard
of care” if and when the usefulness of
the protocol is known to more practicing dermatologists. But realistically,
often times, when it comes to the treatment of rare diseases like Pemphigus, it
is the patient who needs to take greater
control of his/her own destiny.
It has been a
struggle to get
to where I am at
today. I would
never have been
able to achieve it
alone.
•
References:
1. Arin, M.J., Engert A., Krieg, T. And Hunzelman, 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, pp17721779.
International Pemphigus & Pemphigoid Foundation Local Support Groups in the News
Local Support Groups Do Make a Difference!
Contact the IPPF for more information about starting a group in your area at info@pemphigus.org
PA Meeting
a Recipie for
Success
PEM Friends Continues to
Bring UK Patients Together
F
ebruary marked
T
here 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
Gloria’s Health Smart Recipe
¼ cup sunflower seed
¼ cup oatmeal
1 T flax seed
1 T Lecithin
1 T wheat germ
2 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.
Support • What's New • How to Help • Where to Go
The IPPF...
...Bridging the gap between you and current information
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 MasterCard
Card #: __ __ __ __ - __ __ __ __ - __ __ __ __ - __ __ __ __ Expiration Date: __ __ /__ __
Signature (REQUIRED):____________________________________
Printed Name: _ _________________________ Date:___________
Address:_ ____________________________________ Telephone: _________________
State/Province:__________ Country: ___________Postal Code:_ ______ Email: _ ____________________________________________
10
...continued from LOSS OF CONTROL, page 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 symptoms 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. Identifying 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., intelligence, 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 diaphragmatic 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” treatment plan”. You will need to make five
columns. Identify at least three prior-
The Pemphigus Quarterly • Spring 2007
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. Psychologists 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 unexpected changes in your life. Having a
plan that is reasonable and allows positive 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 others, or you can add a new short term
goal. Again, there are a lot of choices
here.
Some areas which may be affected 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 complain all the time, while you are thinking “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 otherwise express feelings in a nonjudgmental 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 flexibility 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 cognitive skills all humans have. You will be
more resilient regarding your treatment
and in WAITING for doctors, tests, test
results, hospital registrations, prescriptions, 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.
•
International Pemphigus & Pemphigoid Foundation 11
Above - Drs. Razzaque Ahmed (Center for Blistering Diseases), Grant Anhalt (Johns Hopkins University), and
Victoria Werth (University of Pensylvania) answer questions for attendees during one of the Q&A sessions.
Right - Dr. Jean-Claude Bystryn (New York University) responds to a patient's question.
2006 Annual Patient/
Doctor Meeting Q&A
T
he 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 activity? 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 “quarterback” for you. Often with pemphigus/pemphigoid, the Dermatologist 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 almost 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 disease, 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 speaking 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 decision depending on activity.
Q. Does bodyweight factor in to dose?
A. Yes. It is widely believed that dose should be 1 mg to 1 kilogram 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 average 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 disease?
A. Because pemphigus lesions can look like other lesions, and it is
rare, average diagnosis time is months, not weeks.
•
12
The Pemphigus Quarterly • Spring 2007
Beware of Internet Scams
by Will Zrnchik
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)
T
he following
Q&A originated as an alert regarding a "phishing" scam posing
as the US Social
Security Administration. The
actual SSA release
can be viewed at
http://www.ssa.
gov/pressoffice/pr/
colaPhishingScampr.htm.
But what is phishing?
Will Zrnchik
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 November, the Social Security Administration 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 designed 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 information.
Action: Delete the email. DO NOT
visit the website. Recognize that the
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 hackers were scamming America Online®
customers out of their passwords and
stealing their accounts. Phished accounts (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 creating 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 already 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 SUSPICIOUS 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 debunk or verify scams. Snopes.com is
a good site to see about urban legends 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 legitimate site’s Customer Service department, researching it online, or emailing
me at will@pemphigus.org.
•
International Pemphigus & Pemphigoid Foundation The IPPF Support Network
13
Heart2Heart Volunteers and Local Support Groups are there for you.
Contact our offices if you would like to be a volunteer in your area.
Alabama_________________________________________ Oregon_ _________________________________________
Enterprise . . . . . . . . . . . . . . Ann Sconyers . . . . . . . . . . . . . . . . 334-347-0919
Oregon City . . . . . . . . . . . . Nancy Earp . . . . . . . . . . . . . . . . . . 503-650-0962 . . . . . . . . stealthlady1@aol.com
Anchorage . . . . . . . . . . . . . Jim & Scottie Cikanek . . . . . . . . . 907-243-3260 . . . . . . . . . . . . . cikanek@gci.net
Pittsburgh Support Grp... Terry McDonald, Ph.D...............412-421-1300 (office).......tmcdii2@msn.com
Tucson . . . . . . . . . . . . . . . . . Sloan Stevens . . . . . . . . . . . . . . . . 520-514-1343
King of Prussia . . . . . . . . . . Gregory Davis . . . . . . . . . . . . . . . 610-337-8293 . . . . . . . . . . gdaviskop@aol.com
LA Support Group........... Lynn Glick................................310-559-5642.................lynntg@prodigy.net
Sac Support Group.......... Sarah McClellan.......................916-496-0870...........mccolesteve@msn.com
Agorura Hills . . . . . . . . . . . Barb Roller . . . . . . . . . . . . . . . . . . 818-991-6569 . . barbara-roller@sbcglobal.net
Arroyo Grande . . . . . . . . . . Ted Schepp (BP) . . . . . . . . . . . . . 805-481-5581 . . . . . . . . teddy-milehi@att.net
Chino . . . . . . . . . . . . . . . . . . Sandra Rose . . . . . . . . . . . . . . . . . 909-591-1496 . . . . . . . . . ybarose@verizon.net
El Cajon . . . . . . . . . . . . . . . . Roy DeViso . . . . . . . . . . . . . . . . . . 619-588-9220 . . . . . . . . . . . . roynmo@attg.net
Fresno . . . . . . . . . . . . . . . . . Sheila Weyant . . . . . . . . . . . . . . . 559-292-4607 . . . . . . . . . . . s.j.weyant@att.net
Irvine . . . . . . . . . . . . . . . . . . Fariba Vadpey . . . . . . . . . . . . . . . 949-863-9798 . . . . shahram.vadpey@cox.nett
Jamestown . . . . . . . . . . . . . Loretta Weatherill . . . . . . . . . . . . . . . . . . . . . . . . . . . dachshundstwo1@juno.com
Long Beach . . . . . . . . . . . . .Sonia Tramel . . . . . . . . . . . . . . . . 562-430-9472 . . . . . . . stramel@speakeasy.net
Mission Veijo . . . . . . . . . . . Sima Ghofranian (Farsi) . . . . . . . 949-859-4356 . sima_ghofranian@yahoo.com
Rancho Cucamonga . . . . . Gregory Wright . . . . . . . . . . . . . . 909-899-6883 . . . . . pittfan723@hotmail.com
Sacramento . . . . . . . . . . . . Amy Granat (Hebrew) . . . . . . . . 916-775-4744 . . . . . . . . . . ajgranat@citlink.net
Tehachapi . . . . . . . . . . . . . . Lillie Swanson . . . . . . . . . . . . . . . 661-821-2224 . . . . . sewingal@lightspeed.net
Croydon (Philladelphia) . . Sue Carpenter (MMP) . . . . . . . . . 215-785-1238 . . . . . . . . . . . .susirecar@aol.com
Warren . . . . . . . . . . . . . . . . Betty Mailhot . . . . . . . . . . . . . . . . 814-726-3612 . . . . . . . . . . pbshcr@kinzua.nett
Alaska___________________________________________ Pennsylvannia_ _________________________________
Arizona__________________________________________ Erdenheim . . . . . . . . . . . . . Stan Schwartz . . . . . . . . . . . . . . . 215-233-5085 . . . . . . . . . . . . . . . stanls@att.net
California_______________________________________ Norristown . . . . . . . . . . . . . Gary Sweetman . . . . . . . . . . . . . . 610-272-6043
Rhode Island____________________________________
Hope Valley . . . . . . . . . . . . Yvette Nachmias Baeu . . . . . . . . 401-539-9827 . . . . . prestigedefrance@cox.net
South Carolina_ ________________________________
SC Support Group............ Cheryl Jordon......864-683-2029 / 864-386-1620 (cell).. rzlaanuw@aol.com
Texas_ ___________________________________________
Dallas Support Group...... Joyce Korn...............................214-739-1485.....................hlkorn@flash.net
Dallas . . . . . . . . . . . . . . . . . Karen Tellez (MMP) . . . . . . . . . . . 817-281-3739 . . . . . . . . . . . . textell@charter.net
Houston . . . . . . . . . . . . . . . Richard M. Schwartz . . . . . . . . . . 713-723-5647 . . . . . . . . . richardm@hal-pc.org
Houston . . . . . . . . . . . . . . . Asha Babooram . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .ashatrini@hotmail.com
Utah_ ____________________________________________
Salt Lake City . . . . . . . . . . . .Matt Cole . . . . . . . . . . . . . . . . . . . 801-546-2507 . . . . . . . . . matt@bachkohl.com
Colorado________________________________________ Virginia__________________________________________
Denver . . . . . . . . . . . . . . . . .Esther Lustig . . . . . . . . . . . . . . . . 303-773-6205
Petersburg . . . . . . . . . . . . . Lynne Stanley . . . . . . . . . . .804-733-3696 . . lstanley@prestigeconstruction.com
Florida_ _________________________________________ Virginia Beach . . . . . . . . . . . Betty Burke . . . . . . . . . . . . . . . . . 757-427-9414 . . . . . . . . . . . bob-bett@cox.net
FL Support Group............. Marcia Pepper (Dec-Apr)..........561-496-1954............. hotpep1221@aol.com Washington_ ____________________________________
Boca Raton . . . . . . . . . . . . . Linda Tafet (Oct-May) . . . . . . . . . 561-451-2947 . . . . . . . . . . . . lin2124@aol.com Kennewick . . . . . . . . . . . . . Caroline Patnode . . . . . . . . . . . . . 509-588-4064 . . . . . . . . . . . cp1353@msn.com
Wisconsin_ ______________________________________
Gainsville . . . . . . . . . . . . . . Athena Davidson . . . . . . . . . . . . . 352-378-4864
Pensacola . . . . . . . Kevin Swanger (MMP-speaks Russian) . 850-433-9872 . . . . . . . kevinswanger@cox.net Eau Claire . . . . . . . . . . . . . . Joanne Palzkill . . . . . . . . . . . . . . 715-835-2209 . . . . . joanne@draganettis.com
Stuart . . . . . . . . . . . . . . . . . Nancy Jennings . . . . . . . . . . . . . . 772-220-4505 . . . . . . abbott27@bellsouth.net Wyoming_________________________________________
Tallahassee . . . . . . . . . . . . . Lee Kotick . . . . . . . . . . . . . . . . . . . 850-893-5538 . . . . . . . d281944@comcast.net Cheyenne . . . . . . . . . . . . . . Brenda Schulz . . . . . . . . . . . . . . . 307-632-2901 . . . . . . . . . gbschulzgo@aol.com
Georgia__________________________________________ Newcastle . . . . . . . . . . . . . . Donna Bunch . . . . . . . . . . . . . . . . 307-746-4108 . . . . . . . . dlbunch@tribcsp.com
Augusta . . . . . . . . . . . . . . . Elizabeth McLendon . . . . . . . . . . 706-650-2715 . . . . . . amclendon@knology.net Australia________________________________________
Gainsville . . . . . . . . . . . . . . Cecelia Espinosa Murphy . . . . . . 770-532-1636 . . . . . . . . . . . . . (speaks Spanish) Booragoon . . . . . . . . . . . . . Julian Chan . . . . . . . . . . . . . . . . . . 08-9316-1787 . . . . . julian.chan@bigpond.com
Powder Springs . . . . . . . . . Jody George . . . . . . . . . . . . . . . . . 678-657-9414 . . . . . . . . wajogeorge@aol.com Canada_ _________________________________________
Illinois_ _________________________________________ Beaumont . . . . . . . . . . . . . . Graciela Mandeville . . . . . . . . . . 780-929-8981 . . . . . lloydman@connect.ab.ca
Chicago . . . . . . . . . . . . . . . . Ed Tenner . . . . . . . . . . . . . . . . . . . 847-251-9375 . . . . . . . . . . .eyekon20@aol.com Ontario . . . . . . . . . . . . . . . . Victoria Carlan . . . . . . . . . . . . . . . 613-866-8706 . . . . . . . . . . . . . . . . . vec@istar.ca
Kentucky_ _______________________________________ Ontario . . . . . . . . . . . . . . . . Val Carvalho . . . . . . . . . . . . . . . . . 416-734-1510 . . . . . . . . ragalorn@hotmail.com
Louisville . . . . . . . . . . . . . . . Madeline Stempkovski . . . . . . . . 502-538-6997 . . mstempkovski@hotmail.com Ontario . . . . . . . . . . . . . . . . Kazi Alamgir Hossain . . . . . . . . . 416-297-0461 . . . . . . . . aljo2288@yahoo.com
Maryland_ ______________________________________ Toronto . . . . . . . . . . . . . . . . Zaibeen Ismail (PF) . . . . . . . . . . . 416-226-2085 . . . . . . . zaibeen@sympatico.ca
Baltimore . . . . . . . . . . . . . . Erica Byrne . . . . . . . . . . . . . . . . . . 410-750-1618 . . . . . . . . . brynete@comcast.net Toronto . . . . . . . . . . . . . . . . Dan Goodwill . . . . . . . . . . . . . . . . 416-488-0453 . . . . . . dan.goodwill@primus.ca
Baltimore . . . . . . . . . . . . . . Elaine Guice . . . . . . . . . . . . . . . . . 410-477-9445
Victoria . . . . . . . . . . . . . . . . Darryl Farquhar . . . . . . . . . . . . . . 250-474-4741 . . . . . . . . . . . . . dgfarq@shaw.ca
Baltimore . . . . . . . . . . . . . . Carol Rubenstein . . . . . . . . . . . . . 410-484-6778 . . . . . . . carolruby@comcast.net China_ ___________________________________________
Massachusetts__________________________________ Hong Kong . . . . . . . . . . . . . Ming Kwong . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . mingkwong@hotmail.com
Boston Support Group..... Alan Papert.............................978-463-0965................ alppy@comcast.net England_________________________________________
Boston . . . . . . . . . . . . . . . . . Carol Fischman . . . . . . . . . . . . . . 617-964-0826 . . . . . . mrmrsfish@comcast.net PEM Friends ................... Carolyn Blain, JD......................44 161 343 7100..... carolynblain77@hotmail
Taunton . . . . . . . . . . . . . . . . Jeff Perry . . . . . . . . . . . . . . . . . . . 508-828-1386 . . . . . . . . . fredgs@comcast.net PV Network..................... www.pemphigus.org.uk.........020 8630 6462
Michigan_ _______________________________________ Leads (Yorkshire) . . . . . . . . Arline Hayman . . . . . . . . . . . . . 07885 894849 . tributes@ctlmanagement.co.uk
Flint . . . . . . . . . . . . . . . . . . . Lois Stanley . . . . . . . . . . . . . . . . . 810-732-7147 . . . . . . . . . lmstanley35@aol.com London . . . . . . . . . . . . . . . . Isobel Davies (MMP) . . . . . . 440 1296 713214 . . isobel_davies@dial.pipex.com
Rockford . . . . . . . . . . . . . . . Joe & Elaine Rothenthaler . . . . . 616-866-8402 . . . . . . . . . ejroth@chartermi.net France___________________________________________
Minnesota_______________________________________ France Support Group..... Josée de Felice.........................01 60 72 18 73........... felice@paris7.jussieu.fr
St Paul . . . . . . . . . . . . . . . . . Dylan McIntosh (MMP) . . . . . . . 651-438-9292 . . . . . dkmcintosh1@mmm.com France Support Group..... Isabelle Gentile........................02 23 96 39 21..................... ifgentile@free.fr
Nevada_ _________________________________________ Paris . . . . . . . . . . . . . . . . . . Peter Foldes . . . . . . . . . . . . . . . . . 01-47-32-4205 . . . . . . . . peterfoldes@tiscali.fr
Vegas Support Group...... Cherie Jacobson.......................702-456-0150... cherdon1972@earthlink.net Mauritius________________________________________
Las Vegas . . . . . . . . . . . . . . Bev Siegel . . . . . . . . . . . . . . . . . . . 702-656 -9998 . . . . . . . . . . . . jabbs39@att.net Pl Ds Papayes . . . . . . . . . . . Sunil Toolsee . . . . . . . . . . . . . . . . 230-773-1149 . . . . . . . . sunil1902@yahoo.com
New Jersey_______________________________________ Mexico___________________________________________
Rochelle Park . . . . . . . . . . . Skip Van Lenten . . . . . . . . . . . . . . 201-406-3933 . . . . . . . . . . . . pvskip2@aol.com
W Orange . . . . . . . . . . . . . . Hannah Lisa Reade . . . . . . . . . . . 973-736-1253
Aguascalientes . . . . . . . . . . Gilberto Aguirre . . . . . . . . . . . . . . 449-917-1716 . . . . . . gaguirre2@infosel.net.mx
_______________________________________
New York_ _______________________________________ Scotland_
Edinburgh . . . . . . . . . . . . . Clare Cameron . . . . . . . . . . . . . . . 1368 860530 . . . . . . clarecam55@hotmail.com
NY Support Group............ Matt Koenig............................516-825-4594..................mattkoe@aol.com
Brooklyn . . . . . . . . . . . . . . . Marcia Pepper (May-Nov) . . . . . 718-946-0927 . . . . . . . . . hotpep1221@aol.com Iberian Peninsula_ ______________________________
Brooklyn . . . . . . . . . . . . . . . Miriam Weiss . . . . . . . . . . . . . . . . 718-332-2681 . . . . . . . . . Cyberbobby@aol.com . . . . . . . . . . . . . . . . . . . . . . . Richard J. Labrador . . . . . . . . . . . 350-49030 . . . . . . . . . . . claim@gibtelecom.net
Dobbs Ferry . . . . . . . . . . . . . Sandra Feldstein . . . . . . . . . . . . . 914-693-1157 . . . . . . . sanherb@optonline.net Israel____________________________________________
Haifa . . . . . . . . . . . . . . . . . . Victor Leikehman . . . . . . . . . . . . 04-993-1117 . . . . . . . . . . . victorlei@yahoo.com
LI/Suffolk Cty . . . . . . . . . . . Lisa Levine . . . . . . . . . . . . . . . . . . 631-979-5856
New York . . . . . . . . . . . . . . Barry KRatz . . . . . . . . . . . . . . . . . 914-723-3698 . . . . . . . barry@vsrsystems.com Italy_ ____________________________________________
North Carolina_ ________________________________ Support Group (Rome).... Anna Lisa Riccardi................................................................ alz46@yahoo.it
Chapel Hill . . . . . . . . . . . . . Erin Pias Hines . . . . . . . . . . . . . . . 919-942-8781 . . . . . . . acaspase3@yahoo.com New Zealand____________________________________
Ohio_ ____________________________________________ Nelson . . . . . . . . . . . . . . . . . Gloria Romano . . . . . . . . . . . . . . . P. O. Box 1051, Nelson, New Zealand
OH Support Group........... Gina Panico................................................... ginapanico@columbus.rr.com Netherlands_ ___________________________________
www.pemphigus.nl........ Hermien Konings..........0031 512 537812............ hermienkonings@planet.nl
Cleveland . . . . . . . . . . . . . . Roz Cameron . . . . . . . . . . . . . . . . 216-896-0952
Dearborn . . . . . . . . . . . . . . David Bazzy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . cbazzy@aol.com Phillippines
Toledo . . . . . . . . . . . . . . . . . Dorothy Strayer . . . . . . . . . . . . . . 419-874-5696
PI Support Group............ Dr. Benjamin Bince..................632-711-6740...................bbin@runbox.com
14
The Pemphigus Quarterly • Spring 2007
Thank You to our 2006 Donors & Sponsors
International Pemphigus & Pemphigoid Foundation
Thewould
like to thank everyone for their support and contributions over the past year. Your help has been overwhelming and the Foundation would not be where we are today
without your generosity.
The IPPF Growth Campaign was a huge success. Our
CORPORATE DONORS &
SPONSORS
Aspreva Pharmaceutical Corp
Centric Health Resources, Inc.
Crescent Healthcare, Inc.
Midwest Textile Association
(in honor of David Baron)
Nicusa Investment Advisors LLC
Prompt Care Inc.
Talecris
ZLB Behring L.L.C.
GRAND BENEFACTORS
($5,000+)
Sam Domb
Fuchsberg Family Foundation
Howard & Mindy Unger
Zimmerman Family Foundation
BENEFACTORS ($1,000-$4,999)
A. Razzaque Ahmed, M.D.
David & Cherie Bazzy
Bernard & Toby Nassbaum
Foundation
Jean-Claude Bystryn, M.D.
Frank & Lucia Darco
Far East Brokers & Consultants, Inc.
Russell Hall, III. M.D.
Lee Heins
David Israelite
Elliott Kahn
Phyllis Kessler
Neil Korman. M.D.
Leonard & Arleen Kratz
Alan Livingston
Frances Meadows
Jonathan Michaeli
Nayana & Jag Patel
Marvin & June Rogul
Richard Roisman
David Sirois, D.M.D., Ph.D.
John Stanley, M.D.
Wendy Staso
Robert Swerlick, M.D.
Marcy Syms
The Honorable Janice A. Taylor
Walter & Avis Taylor
Edward & Karen Tenner
Tuscanooga Baptist Church
SPONSORS ($500-$999)
Grant Anhalt, M.D
Kirsten Bellur
Henry Branscome
Marjorie Freilich-Den
Paul Goldman
Sharon Gordon
Noor & Kuntie Hasso
Brian Kaufman, M.D.
Casey Kochevar
Howard & Joyce Korn
Betty MacGregor
Dedee Murrell, M.D.
Ron Plude
Alan Pruzan
Michael & Karen Rosengarten
Marvin & Claire Rosengarten
Bernice Schroeder
Richard Schwartz
Stanley & Joan Schwartz
Joel & Ellen Shapiro
Edward & Lillie Swanson
Lionel Teicher
Andrew Van Der Poll
J. Gregory Wright, M.B.A.
Fred & Cathey Youngswick
PATRONS ($100-$499)
Marilyn Abel
Rebecca Albrecht-Oling
Hope Albrect-Klein
Cynthia Alexander
Masayuki Amagai, M.D, Ph.D.
Danielle Anello
Esfira Annenberg
Betty Barnard
Susan Bendell
Eli Ben-Dor
Scott & Linda Berger
Peter Blumberg
Doug & Annette Bohannon
Lorraine Boyle
Dolly Brickman
W. Byrne
Susan Cohen Byrne
Jeffrey Callen
Charles Camisa
Julian Chan
Malathy Chandrasekhar
Lucille Cicero
Jack Cohen
Aliza Cohen
Mark Dahl, M.D.
Peter Danly
David Darrow
Anthony & Pearly David
Elsie Deacon
Sona Dennis
Tony Di Meo
Nancy Dimeo
Richard Dukes
Sheila & Peter Durfee
Rahm Dvir
Veronica Eads
William Eaton
Jay Eller
Mark Ellis
Joan Ernst
John Fantasia, D.D.S.
Jeffrey Feingold
Eileen Feldman
Gary Fentress
David Fivenson, M.D.
Tom & Catherine Foley
David Fortunato
Corrinne Foster
Sandra Frank
Eleanor Garner
Shelley Garrido
Howard & Julie Gersh
Ken Gin
Lynn Glick
Joel & Linda Gluck
Andrew Goldwyn
Bob Gouin
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!
Louise Gould
Jean Graber
Lois Gregory
Heather Hall
Takashi Hashimoto
Debbie Haupert
Martin Hauptman, M.D.
Barbara Hee
Sharon Hickey
Leahbelle Hill
Peter Hilsenrath
Margaret Ianniello
Don Isaacson
Mary Jackson
David Jacobus, M.D.
Thomas Jones
Marcel Jonkman, M.D.
Robert Jordon, M.D.
Robert Jostes
Paul Judson
John Juergens
Joseph Kanarek, M.D.
Lewis & Sandra Kanengiser
Francisco Kerdel, M.D.
Jin Kim
Allen & Betty Kimball
Mary Kirstein
Reuben Koolyk
Milan Kosanovich
Lee Kotick
Barry Kratz
Solomon & Patty Kurz
Ming Kwong
James Leder
David Leventhal
Daniel Levine, C.P.A., P.C.
Fernando Lopez
Dwight Magalis
Pamela Mainini
Maria Makowiecka
Peter Mannherz
James & Cheryl Marple
Lori Marracino
Joya Martin
Martin & Debra Mason
Christina Matalon
F. J. McCarthy
Linda McCreary
Julie McKeever
Don Meyerson
Joan Miller
Richard & Patricia Milletics
Ginat Mirowski, M.D.
John Monahan
Janice Moskowitz
Daniel Pagano
Amit Pandya, M.D.
Alan & Gloria Papert
Jay Parmar, M.D.
Dharmista Patel
William & Geraldine Pauls
Peter Peterson
Jim Randall
John & Jeannette Reding
Greg & Magda Roberts
Betty Roberts
Nick Rodes
Maria Rodriguez
Gary & Barbara Roller
Domenick Romeo
Jennie Romero
Sandra Rose
Arthur Rosengarten
Margaret & Ted Rothschild
Joseph Ruffino
Mary Ellen Rusnov
Jane Ryan
Anthony & Ann Santoro
Marie Scala
Susan Schiefelbein
Craig Schlossberg
Bill & Isobel Schultz
David Mark Schwartz
Geraldine Schwartz
James Sciubba, D.D.S.
Andrea & David Segall
Helen Segall
Jody Seligman
Therese Selim
Adoph Seltzer
Angelina Selvaggio
Richard Shaikewitz
Alan Shotkin
Sam Sicoli
Manuela Silva
M. O. Skelton
Myra Slachetka
Ellen Slass
Joel Smason
Marilynn Smith
Diane Smith
Susan Smith
Albert Smith
Teresa Smith
Monroe Sonnenborn
Bonnie Stein
Sloan Stevens
Philomena Straboli
Norman & Linda Tafet
Walter Tasem
Sylvia Tolman
Paula Tomei
Jay & Elaine Turner
Frank Vargas
Herb Velazquez
Lionel & Margaret Vieira
Alice Voytovich
Chi Vu
Elizabeth Weinreb
Victoria Werth
Rose White
Carol Wilkerson
Alice Wilkie
Carole Willis
Arlene Wolk
Wallace Wolman
Amy Woodard
David Woodley
Roberta Wool, Ph.D.
Irene Wyllie
Eva Yachnes
Kim Yancey
Rachel Youngren
Elizabeth Zackheim
Dr. Esther Zaret
David Zaret
Richard & Lucy Zaslow
Toby Zucker
International Pemphigus & Pemphigoid Foundation FRIENDS (up to $99)
Seppo Aarnos
Jennifer Alexander
Nannette Alonso
Ida & Nazarene Angelini
Farideh Assadi
Bernice Bamber
Mary Barger
Robert Barish
David Baron
Lynn Bear
Marla Beeson
Beverly Bell
Larry Bennett
Pola Berggrun
Jennifer Bienstock
Sidney Blum
Cynthia Blum
Madeline Bonasia
F.E. Booker
Terri Branch
Jody Bredfeld
Jonathan & Beth Brody
Terrence & Donna Buckley
Donna Bunch
Paul Burke
Cathy Burns
Buddy Burns
Alberto & Barbara Camacho
Joe & Louise Cangelosi
James & Jeya Carmichael, Jr.
Frances Carnright
Dorothy Carpenter
Audrey Caviness
Mike Chang
John Chiazza
Ron Chrisco
Doris Coffman
Ralph Cogan
Charles Cohen
Ronald Cohen
Karen Colston
Geraldine Copley
John Cortez
Barbara Crane
Mary Crapanzano
Louis Crespo
Vincent Crisanti
Christopher Crotty, M.D.
Carol Dane
Dan & Joan DeLucie
John & Patricia DeSmidt
Michael DeStefano
Roy DeViso
Marie Dippold
Donald Dragovich
Ora Dromi
Renate Eads
Marilyn Eagle
Hyman Eiduson
Lois Eliason
Leslie Evans
Carolyn Evilsizor
Rachel Fagen
Michael Farrer
Leonard Feingold
Jill Feinstein
William Fena
David Fishman
Phyllis Forman
Harold Forrest
Evelyn Freeman
Janice Frezel
Sandra Fryda
Barbara Futterman
Leslie Garris
Lois Gauruder
Barbara Gerson
Nessa Gibbardo
Lori Giese
Sandra Gittlen
Martin Goldman
Connie Golightly
Harold Goodwin
Carol Goren
Bertha Graham
Rachel Gross
Nikolaus Grunert
Joseph Gwerder
Steven Hacker, M.D.
Alice Hammel
John Hamnett
Amy Hanan
Stanley Hara
Karen Hardesty
Jill Harris
June Hauer
Barry & Cynthia Hersh
Elizabeth Hilli
Jan & Herb Hillman
Herb & Jan Hillman
Hans-Joachim Hirsch
Greg Hirsh
Alice Horten
Gloria Housel
Irwin & Eve Huppert
Marlene Imbesi
Lena Ippolito
Guity Jam
Jessica Jolly
Eva Jones
Julius Jones
Gerald & Carol Joseloff
Richard Juliana
Richard Kaplan
Cecile Kasner
Marcella Kelleher
Milton & Rose Kelman
Matien & Nargis Khalid
Carolyn Knight
Sharon Knisley
Margaret Kolar
Gerald Kossoris
D. Kothari
Marilyn Kroop
June Kuoppala
Howard & Roz Kurman
Neil Kuvin
Patricia Lane
Ingeborg Larson
Donald LeBoeuf
Elinor Lerner
Charlotte Lesher
Rose Levin
Lisa Levine
Mayer & Pat Levy, Jr.
Joyce Lichtenstein
Jonathan LoMonico
Patrick Lonergan
Mary Lucas
Eleanor Lustig
Marjorie Magner
Betty Mailhot
Hariclia Makoulis
Kristin Makowski
Estelle Manfredi
John Manieri
Dolores Mannain
Erica Mathias
Karen McCauley
Joyce McMoran
Janice Melton
Robert Merlin
Donna Micun
Janelle Miller
Emily Miller
Isabel Mintz
Beatrice Mockus
Lynda Molleson
Antonio & Zron Moran
Cecilia Murphy
Paul & Nancy Murphy
Helena Murray
Constance Myck
Katherine Nakanishi
Sherry Nemmers
Lee Nesbitt, Jr.
Andrea Nordell
Milton Norstrom
Arlene Novak
Theresa Orlando
Zulay Oropeza
Nayantara Panchal
Lynn Pash
Wendy Patitucci
Barbara Paxson
Elizabeth Peel
Morton & Linda Peetluk
Christine Pepe
Maury & Shirley Perlstein
James Piedrafita
Bernard & Naomi Podolsky
Lorrie Pond
Harry Povlotsky
Robert Poznanski
Loretta Poznick
Georgette Psarakis
Venus Rastegar
Shanaz Raza Shariff
Peter Reich
Jim & Judy Reynolds
Irene Richardi
Shirley Rifkind
Ellen Rigg
Alvine Robinson
Lillian Rolon
Howard Roth
Benjamin & Gloria Rubenstein
Carol Rubenstein
Conrad & Anita Sabin
Jose Salazar
Robin Schectman
Elaine Schenkerman
Patty Schoenfelder
Martha Schuck
John Schuster
Cathy Schwartz
Yvette Schwartz
Lynn Schwarz
Stacey Shapiro
Susan Share
Sharon Shea
Nancy Sher
Shirley Shimizu
Adrienne Shleser
Steve Shore
Lewis Shuster
Max & Rhoda Silverberg
Lillian Skeba
Doug & Mardell Smith
Maxine Smith
Annette Sowa
Richard Stachurski
Camilla Stacy
Lois Stanley
Madeline Stempkovski
Robert & Mary Stetter
Samuel Stockman
Betty Strickland
Elizabeth Stuenkel
Marion Suggett
Kevin Swanger
Cheryl Sweet
Robert Swezey
Michael Talianchich
Christian Thomas
Argiro Thomas
Annie Thompson
Hank & Gail Tinsey
Carrie Twitchell
Charles Valenti
Fatima Velji
Theresa Vitiello
John Warfel
Lisa Weinstein
Marcia Weinstein
Barbara Weinstein
Ruth Wies
Ruth Willner
Elke Wittenberg
Art Wolfe
Eulalia Wycoff
Martin Yasuda
Richard Zaffuto
Karen Zallen
Schania Zelvin
Peggy Zimmerman
Richard & Marjorie Zitomer
15
DONATIONS IN HONOR/MEMORY
In Memory of William Allen
Carol Dinow
Annie Kornfeld
Marcy LaKind
Alvin & Carol Levine
Skip & Carol Moeller
Judith Porvin
Eric & Jennifer Rosenberg
Paul Schreiberman
Lisa Schwartz
Ellen Sherman
Harriet Stone
Heather Zamora-Hegg
In Memory of Martha Cohen
Robert Baffa, Jr.
Braman Family Foundation
Gary Cohen
Mark & Susan Cohen
Michael & Wendy Elkin
Gary Farbish
Faye Ferrando
Margaret Fussell
Gerry & Judy Gould
Barry Haiman
Kaufman & Rossin Professional
Association
Barbara Keyes
Michael & Susan Keyes
William McCarthy
Gary & Cynthia McGraw
Stanley Newmark
Josephine Nicastro
Gloria Scharlin
Glenn & Ellen Widom
In Memory of Elaine Tannehill
Patricia Adam
Deborah Jackson
Terry McCurdy
John & Kathy Spencer
Tiffany Tinsey
In Honor of Kuntie Hasso
Admiral Courier Services, Inc.
Fred Chill
Cheryl Feld
Wieselthier & Melzer, CPA's, P.C.
In Honor of Carol Rubenstein
Sheldon Blackman
Bernie & Marsha Bondroff
Robert Boublitz
Jack & Dolores Curtis
Barbara Finn
Etta & Norman Friedman
Howard & Diane Gartner
Lilya Gelman
Louis Hogan
Beth Kosiak
Jerry Kurman
Warren & Janice Morganstein
Henry & Charlotte Reches
Alvin Rubenstein
Norman & Megan Rubenstein
Sylvan Rubin
Linda Schwartz
Allan & Rosalind Shenker
Marty Zayon
In Honor of Toby Zucker
Judith Bernstein
Carol Sym
Nancy Zirin
MATCHING GRANTS/GIFTS
America's Charities
Bank of America Matching Gifts
Baxter International Foundation
GoodSearch
HP Employee Charitable Giving
Illinois Tool Works Foundation
Kimberly Clark Foundation
United Way
United Way of SE Pennsylvania
Wellpoint Foundation
16
The Pemphigus Quarterly • Spring 2007
Donate
your car!
If you live in the United States
you can donate your vehicles to
the International Pemphigus &
Pemphigoid Foundation! Your taxfree 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
The 10th Annual Patient/Doctor Meeting will be
September 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!
INTERNATIONAL
Pemphigus &
Pemphigoid
FOUNDATION
1540 River Park Drive • Suite 208 • Sacramento, CA 95815
Phone: 916-922-1298 • Fax: 916-922-1458
www.pemphigus.org
IPPF Vehicle Donation Program
1540 River Park Drive • Suite 208 • Sacramento CA 95815
Non-Profit
Organization
US Postage
PAID
Tucson, AZ
Permit No. 271