Dear Friends,

Just a note to let everyone know that I will be hosting a free online
Pemphigus and Pemphigoid Q and A called PEMPHIGUS  and YOU. It is not a
discussion group. It is an informal and personal approach to giving you
guidance by sharing.

I invite you to add this email address into your online address book for
posting to PEMPHIGUS  and YOU.

pemphigusandu@earthlink.net

This new Pemphigus/Pemphigoid Q and A is not affiliated in any way with or
sanctioned by the National Pemphigus Foundation. It will be dedicated to not
only giving support to those with Pemphigus and Pemphigoid, but questions
will be personally and discreetly answered to help those who need help in
fighting these devastating diseases. Suggestions and answers  will be given
in a relaxed, non stressful environment with plenty of guidance in an
organized fashion. You will save time by not having to wait for an answer or
have to wade through numerous posts not having to do with
Pemphigus/Pemphigoid.

You will be able to ask me for guidance regarding Pemphigus/Pemphigoid
questions you may have and in doing so learn some of  the time-tested ways
to discuss your particular case with your doctors. I have no medical
training, but I can share much needed information for dealing with various
medications and treatments and advice to help newly diagnosed find the best
help and care they need right away ...and enable long-time patients and
caretakers to speak with their personal doctors with confidence. I will not
be telling you how to treat your disease.....just providing guidance.

I will be glad to share up-to-date information to health articles and
research and help you keep abreast of new advances in Pemphigus and
Pemphigoid treatments including medications.

If you ever need someone to hold your hand and wish to be able to post to
someone who has walked in your shoes, you can count on me.  All answers will
be private and not shared with others. All questions and answers will be
confidential.

I previously served as the hands-on administrator/ moderator of the NPF
online forum for Pemphigus. Although a discussion group can definitely help
in many ways...especially the camaraderie of friends and different points of
view.... I personally feel without a moderator who actually has Pemphigus or
Pemphigoid and is not visibly involved daily to guide and assist directly
online, especially for new members, many answers and valuable health
information in posts are lost forever, as people  are constantly coming and
going within support groups. So much good information goes out the window
with a simple delete. I hope to fill that gap with PEMPHIGUS and YOU.

I will always be able to keep the supply of information flowing as I have
maintained an updated filing system for almost two years cataloguing all
aspects of our diseases and will continue to update these files.

 And along with all I have learned through my personal battle with PV and
from information  I have read and I have learned from others, if I can't
give you an answer, I will try to assist you to the best of my ability in
finding you an answer...so again, you will be able to discuss your care
confidently with your own doctors.

I certainly don't profess to have all the answers...far from it...nobody
does....but I do feel I have the ability, understanding and caring and time
to share and help others sort through the maze of information out there and
find their own way to tame these beasts we face daily. Then patients can
bring this information to their doctors for discussion.

I have been there... so I know that when you are feeling scared and alone,
frightened and in pain you want to be comforted and get your hands on
organized ideas right away for helping you get the best treatment you can.
You want to  be able to speak with your personal doctor right off the bat
with understanding about your rare disease and how to prevent possible
side-effects from your medications and what tests are necessary...but you
should know ALL of  these things from the get-go....not learn it in dribs
and drabs...so that your health may be jeopardized. When you are sick,
scared and in pain it is hard to have the desire to sort things out about
your care. Timing can be so crucial...and a major factor as to how fast you
are able to win the battle.

This new Pemphigus/Pemphigoid Q and A ...PEMPHIGUS and YOU....will provide
you with that concerned and caring kind of guidance...and quickly.

There is no cost involved to ask questions and get answers and I am running
PEMPHIGUS and YOU on my own time, without any compensation.

I hope this new way of providing information and guidance will be an adjunct
to the NPF online discussion group and will be the helpful organized aid I
believe many sufferers are searching for. I will continue to be a member of
the NPF discussion group to keep in touch with all. I hope the NPF will give
its blessing to my way of helping others fighting Pemphigus and
Pemphigoid...as our goals are the same.

Together we can fight Pemphigus and Pemphigoid and hopefully a cure will be
found in the very near future and put me and the NPF out of business!

If you ever need me, I will be here for you.

Please feel free to write to me at

pemphigusandu@earthlink.net

if you have any questions.

Warmest regards and best wishes,

Susan Maizner(PV)