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)