Our Stories
The
stories on this site were written by people who
have experienced a rare autoimmune disease known
as Pemphigus, and are now in remission.
In some cases, the period of remission would
suggest that once recovered, there is hope that
the disease may never return again. Although the
causes of pemphigus remain a mystery, a study
conducted by Dr. Jean-Claude Bystryn, M.D.,
concluded that "Remissions were found to be
much more common than previously reported."(1) These
stories are only a handful of the many that could
be told, but they provide a glimpse into the
experience of having pemphigus, and the hope of
remission.
Skip: "I was diagnosed
with pemphigus vulgaris in 1994, and went into
remission in January, 1998, and have not had any
symptoms since then. Being in remission for so
many years is a story I felt needed to be told,
and one that I hope will be inspiring to
others." Skip's
Story
Ron: "...soon after, I
started seeing results, my skin actually was
healing and ( I ) started dropping my prednisone
and then the cellcept. I am now medication free
for over a year but I still take the vitamins
everyday." Ron's
Story
Lisa: Lisa's
story appears in diary form. It is a very
interesting account of her experience with
pemphigus, and the road she took to remission.
There is a similarity between Lisa's story, and
Ron and Skip's: in all three cases, they had
supplemented their diet with calcium/D tabs and
multi-vitamins or stresstabs, high in zinc. Lisa's Story
Yvette: Yvette's story begins
about 11 years ago. Today she writes,
"Psychologically, I feel very much like I am
in remission. And to me, that is no small
thing....I have learned to understand that it is
important to be vigilant and make every effort to
understand the ways we are able to help
ourselves. In tandem with the medical profession
I believe that makes a very powerful team." Yvette's Story
Robert: "I was diagnosed
with mild pemphigus vulgaris in 2005. I had a red
rash that turned into small lesions on my chest,
back, and genitals; my tongue was swollen and
painful with severe mapping....6/5/2008 The P.V.
is in remission and I feel great. I still have a
little Psoriasis on my leg …." Robert's Story
Sally: "I think using supplements
can be very wonderful and if it works for some,
then that is great. I don't think, however, it's
always enough for everyone. And, I think with
this disease, the treatment and journey is
different for us all." Sally's Story
Beth: "I have PV &
have been in remission since 2003 after battling
active lesions for 10 months....In August 2003 my
PV specialist told me that I no longer
had active lesions and would not have to return
unless I had another flare." Beth's Story
Roger: "I haven't had a
blister on my body or scalp in 3 years. I see my
Dermatologist every six months and I am still the
only patient he has with Pemphigus." Roger's Story
June: "I have been in remission
the last year and a half, or two years, thank
goodness. Am now pemphigus-free!
Hallelujah!" June's
Story
Guestbook
Thank
you for visiting. Please sign our Guestbook.
Helpful Links to Understanding
Pemphigus
What is Pemphigus?
Pemphigus
is a rare skin disorder that strikes between 1
and 4 people for every 100,000 worldwide. It
begins as a blister, and can start in the mouth,
the eyes, any surface of the skin or mucous
membranes, or a combination of these areas. It
can be painful, uncomfortable, and
life-threatening, if left untreated. Because the
disease is so rare, the first signs of pemphigus
are often confused with other, less serious
diseases, and treated ineffectively. Many doctors
have never seen a case of pemphigus. Those who
recognize the symptoms, and understand the
severity of the disease, usually refer their
patients to a specialist in Dermatology.
Treatment
Pemphigus
has been successlly treated using a variety of
approaches designed to suppress the immune
system. More often than not, the treatment
involves the use of drugs, such as prednisone,
which can cause adverse side effects, and deplete
the body of specific nutrients essential to good
health. For more information on offsetting this
effect, click on the link below for Nutritional Support.
If
you suspect that you have pemphigus or
pemphigoid, it is important to see a qualified
dermatologist as soon as possible. You can find
more information, referrals, and support, at the
web site for the International
Pemphigus and Pemphigoid Foundation (IPPF).
E-mail Discussion Group
The
IPPF sponsors an e-mail discussion group where
patients and caregivers exchange information,
stories, and support. It is a great way to meet
other people with pemphigus, and to learn more
about this disease and the different types of
treatments that are available. For information on
how to join the group, Click
Here.
How You Can Help
The IPPF is collecting data on
individual cases of pemphigus to correlate
information and treatment methods that will help
current and future patients. Please join their
effort by registering in the Health Management
Program by clicking Here.
Theory of Pemphigus and Remission
There
is evidence to suggest that pemphigus is the
result of aging and the diminished function of
the thymus gland, which regulates the immune
system. Research has shown that the mineral zinc
may play an important role in restoring the
thymus and, in the case of pemhigus, lead to
remission. Click
Here.
Theory of Pemphigus
and Remission: The
connection between the thymus gland, the immune
system, and a possible road to remission.
Nutritional
Support: While not
intended to replace conventional forms of
treatment for pemphigus, there are several
important nutrients that should be considered to
replace the deficiencies caused by prednisone,
and also as a possible means of improving the
chances for recovery.
Diet and
Low Blood Sugar The low blood sugar diet might
also be helpful as a means of controlling blood
sugar levels while on prednisone. The theory
behind avoiding refined sugars, such as candy,
cakes, ice cream, etc., in favor of more complex
carbohydrates found in fresh fruits and
vegetables, is that with a more complex
carbohydrate, the release of glucose into the
bloodstream is not so sudden as to cause an
insulin reaction.
International Pemphigus and
Pemphigoid Foundation: The International Pemphigus and
Pemphigoid Foundation (IPPF) is the best resource
available on the web for information about
pemphigus. It is the first place to go for a
comprehensive picture of what pemphigus is, how
it is treated, and where to look for help. It is
also a great source of support, and offers
several options which allow those with pemphigus,
and those who care for someone with pemphigus, to
e-mail information and share their personal
experiences with one another as members of an
online discussion group. There is also a forum
available and an archive of past messages, as
well as other helpful links, at the IPPF site.
E-mail: If you
have a story about your own remission, or would
like to comment on Pemphigus in Remission, you
can write to stories@pemphinremission.com.
*
* *