The PEM Friends (UK) met in June for their annual Away Weekend hosted by Raymond and Carolyn Blain.
Nestled in the pristine Swiss Alps, the Hotel Allegro in the city of Berne, Switzerland was the location for an international meeting discussing all aspects of pemphigus. The meeting consisted of 3 days of intense scientific discussions. The meeting was co-sponsored by the IPPF and many members of the IPPF Medical Advisory Board were present. Included were Dr. Jean-Claude Bystryn, NYU Dermatology; Dr. Sergei Grando, UC Irvine; Drs. John Stanley and Victoria Werth, UPenn; Prof. Michael Hertl, Phillips Univ., Germany; Prof. Marcel Jonkman, Univ. of Groningen, Netherlands; Prof. Pascal Joly, Rouen Univ., France; Dr. Masa Amagai, Keio Univ., Japan; and Dr. Grant Anhalt, Johns Hopkins University. Ms. Janet Segall was there representing the patient’s perspective and the IPPF.
What happened to the lazy days of summer! After slicing and drying almost 300 pounds of tomatoes from my garden, it is a happy frenzy when I get to the IPPF office – which is, at least, air conditioned. Will has been lifting the heavy weight of building an automated system that delivers our direct patient support in a much more streamlined way. Now you can call your Peer Health Coach directly, no matter where they are. In addition, we have added mechanisms to ensure timely follow-up with requests that come from the website, Forums, phones, or emails, and even better, to request, from those helped, feedback on our services and suggestions for improvements.
Part of this technology improvement has gone to strengthen our data registry. We now have, in just slightly over one year, 171 (as I write this) people surveyed through our Health Management Program. This means that we have what is close to statistically significant data on the natural course of P/P disease and reliable evidence of treatment outcomes and side-effects. Finally we can provide that data (all de-identified and anonymous) to doctors to develop “Best Practices” standards for treatments. This allows doctors not familiar with treating P/P to have some confidence in the course of care they offer and, in the anticipated success of different options. Most importantly, having large scale information on your illness experience, treatments, outcomes and complications will allow the IPPF to more effectively pursue policy and discovery opportunities that improve treatments, outcomes and your quality of life. Watch for more news on the registry environment and your vital participation….having information from a large number of patients will optimize the accuracy of our insights and our effectiveness in illness advocacy. In addition, we can give data to researchers to identify trends and potential mechanisms to manage or cure the influence of those rogue antibodies.
We still need your help. Having 500 patients surveyed provides a much richer set of data points to enhance confidence in the choices that doctors and researchers make about fruitful areas of pursuit (we have over 3,500 patients that CURRENTLY use our services). We need your data. To this end, Will, again is working his wizardry to put our survey’s online so that even people who do not want or need the added comfort of a personal “Peer Health Coach” can still contribute to this wealth of knowledge about these wildly misunderstood diseases. Please, call us or go to the website and indicate that you want to participate in the “HMP” Registry data collection to help advance a cure. You can request information at www.pemphigus.org/hmp.
For those of you who truly appreciate the opportunity to connect to a Peer Health Coach, we have expanded our program and now have numerous coaches, located across the country, including both men and women coaches and coaches with different forms of P/P – so you can always connect with what you need. All Peer Health Coaches are P/P challenged and have participated in and been certified by an outside training program to provide valuable P/P wisdom as well as advice. If you would like to talk with a Peer Health Coach, you may submit a request on the website, or call the office and choose Option 2. You will be provided a Coach based on your location and disease experience – you can always switch if you want — they will collect your data and discuss with you any areas of interest or concern.
We also especially need you to support the IPPF in 2009. The conference of P/P luminary medical professionals to define the “Best Practices” in treating this disease – which will help, literally hundreds of P/P next year alone – has a budget of nearly $25,000. The money will be spent to gather data, evaluate completed studies and to produce and publish a scholarly paper as well as provide the results to ALL of the practicing “main street” medical-dermatologists in the US. Fortunately, the IPPF has been honored in 2009 with a Matching Donation Campaign (see details on page 11) which allows every dollar donated this year to do twice the work and make twice the progress. We know this is a tough economy for everyone, but we are anxious to continue our momentum in making a real difference in the course of this disease; Please give what you can, or give again if you can.
After the registry contains robust numbers of patient data we have plans to implement a tissue collection bank to augment the data report with actual samples of blood, tissues, etc — as the foundation for medical trials — more on that next time.
PS: Make plans now to join us in Philadelphia, PA April 30-May 2
for the 2010 Annual Meeting. And let us know if you have any
connections in Philly that could help make it a great(er) meeting!!
Janet said, “I thought I would try to start the Foundation. Unfortunately, I was not prepared for the enormity of the task, and found it all quite over-whelming; so I gave it up; though I continued to look for others and gather information.” This was taken from The PV Foundation News, Volume 1, Issue 1, March 1995 – all five pages.
Nearly seven years before starting what would become the IPPF, its founder, Janet Segall, walked away because the task overwhelmed her. These diseases can do that to a person – overwhelm them. But she did find a way.
I woke up one morning to say, “I’m going to do it.”
Where would patients be today had Janet not found the courage to take pemphigus on full force But Janet was compelled to make a difference – and what a difference it was!
On July 31, 1994, the PV Foundation’s Board of Directors gathered in San Francisco. There, five people met to lay the foundation for this Foundation. Their first official meeting was in February 1995 after becoming a 501(c)(3) in October 1994.
There will always be adversity to face regardless of the reason; change is inevitable in life and unless a person can accept and overcome it, they will be consumed by it. Janet continues her efforts to champion change, advocacy, patient rights, and peer support on a much broader scale.
True to her original commitment, Janet continues to counsel pemphigus and pemphigoid patients, and now she will also offer her counseling skills to those with other autoimmune diseases.
The work Janet did with the Foundation was life-saving to thousands of people around the world. Statements like, “I would be lost without Janet and the IPPF” and “Janet saved my life” are commonly heard around the offices, on the Community Fourms, and in the Email Discussion Group. Luckily for the IPPF, patients continue to benefit from her knowledge and experience.
Janet is in the early stages of a new startup venture to educate and counsel patients regardless of their disease. Janet is scheduled to take additional classes that will add to her repertoire of skills and further benefit the patients.
What started as one woman’s journey for help became a unified effort of hope; a common hope…an uncommon bond. All of us honor Janet for her courage, wisdom, perserverence, and committment to our cause: finding a cure.
Last year I signed up for the IPPF’s Health Management Program with the idea that I would benefit the Foundation with vital information and as a result I would learn more about my disease. A couple of weeks ago a thoughtful e-mail arrived from my new Health Coach-Marc Yale. I had seen Marc on stage at the IPPF Annual Meeting receiving an IPPF Star Award for Patient Support. A couple of days later, he called to follow-up on my health, current progress and we had time to discuss treatment options.
As a patient with Bullous Pemphigoid, Marc is extremely knowledgeable thoughtful and caring. As a member of the Board of Directors, I appreciated his professionalism and was pleased that it has been so easy to participate in the HMP. If you have not participated yet be sure to contact the IPPF office. You, as well as others, will benefit from the experience.
Lee A. Heins
Secretary & Treasurer
IPPF Board of Directors
As a member of the IPPF BOD and one of Janet’s longest standing supporters, I wanted to relect on where Janet brought us from — and to.
Janet Segall has had many outstanding accomplishments since she started the Foundation in 1994. In fact, it could be said that it was a textbook organizational growth plan. In that first year, Janet was a single parent from San Francisco with a teenage daughter, Tina. Janet had been living with Pemphigus Vulgaris for 10 years and could not find the needed support anywhere.
With donations from family and friends, she started a non-profit 501(c)(3) organization called the National Pemphigus Vulgaris Foundation (NPF), later International Pemphigus Foundation (IPF), and most recently the International Pemphigus Pemphigoid Foundation (IPPF). She worked hard to form a Foundation Board of Directors — which has grown to 12 members. Janet then started networking with the best dermatologists in the United States and Canada (and later the world) with the help of Dr. Grant Anhalt of Johns Hopkins University and Dr. Jean-Claude Bystryn of New York University. A Medical Advisory Board was soon formed which now has 20 members from all over the world.
Physicians and pemphigus researchers started talking to each other with her help and have developed protocols for drugs such as Imuran, IVIG and Rituxan. With Janet’s encouragement, many of our pemphigus and pemphigoid physicians referred their patients to the Foundation. Janet was an early supporter of the internet which provided a fantastic tool for patients to discover the organization and communicate with each other via an e-mail list server.
A quarterly newsletter provided vital information to patients and physicians. Patient Support Groups were started in Los Angeles, San Francisco, New York, and Toronto with Boston, Philadelphia, England, Israel and Italy soon following. The next step was an annual meeting. The Annaul Patient/Doctor meetings connect patients and caregivers with the latest information. The IPPF also participates with major dermatology organizations as well as with the National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS), International Allince of Patient Organziations (IAPO), and the Coalition of Skin Diseases (CSD), to name a few. Our organization has even spoken to members of the United States Congress on autoimmune diseases and health care funding.
Today we have outstanding partnerships with many major drug and healthcare companies and our partnerships with them have helped research and patient profiling. The Foundation’s budgets grew from $10,000 in its first year to a budget which now provides for an office in Sacramento, CA with an outstanding staff which serves and provides support to patients from around the world.
Most importantly, Janet has made life better, healthier and happier for countless people worldwide. As the ultimate tribute, Janet found the right physicians at a critical moment and saved MY life. To show my gratitude and offer guidance of the IPPF’s future, I serve as Secretary/Treasurer on the Board of Directors. I can think of no better way to show my appreciation to Janet and the Foundation than to donate my time to making the IPPF better each and every day.
Thank you Janet, for your unselfish gift of vision, support, and sacrifice to pemphigus and pemphigoid patients!
Much has happened since our daughter, Amanda Staso, was featured in the Winter 2006 issue of the Quarterly. At that time, she was in eighth grade, and had just started treatment with Dr. Grant Anhalt after receiving a diagnosis of pemphigus vulgaris (PV) on her 14th birthday in February, 2006.
By the Summer of 2006, Amanda had almost tapered off the prednisone, but was still taking 2000 mg of CellCept a day. She was feeling pretty good, and was nervous, but excited to start high school. Then, in early August, she got sick. It took several doctors to figure out what was wrong, and it turned out that she had contracted the cocksackie virus. Things were confusing because this virus causes mouth sores, just like the PV. The virus resolved, but the mouth sores did not. The virus triggered a full blown flare.
Amanda was very sick. She missed her first two weeks of high school, and had to go back on high doses of prednisone and begin the long taper process all over again. What should have been a fun, exciting time in her life was consumed with physical and emotional turmoil. Physically, her face was swollen, she gained weight, suffered from migraine headaches. Emotionally, the side effects were just as bad. A very conscientious student, Amanda started high school academically behind. She felt isolated, scared, and angry. Yet, as she said in the paper she wrote in eighth grade, she lived life to the fullest, did not dwell on the negative, and soldiered on.
Amanda’s high school years have been very different than what I dreamed they would be before PV. I would never wish this disease on anyone, but I have to say that in some ways, her life is fuller, richer, and more balanced because of it. She is incredibly compassionate, perseverant, and is wise beyond her years.
Amanda is now a junior in high school, and has begun the process of choosing the path for the next phase of her life. She wants to go to college, and study either medicine or education. She takes 3 mg of prednisone every other day, and 2000 mg of CellCept every day. Side effects are minimal.
PV is something Amanda has, but it is not who she is. For her senior project, Amanda wrote, a paper entitled “The Case for Continued Public and Private Commitment to Rare Disease Research and Development” [Editor: See her paper on our website at]. Her research made us all aware that her disease is one of thousands of rare diseases, and how very lucky we are that hers is manageable and that we have the support of the IPPF to help us.
As Amanda’s mom, I never let my guard down. I mourn that her life is not care-free like a teenager’s should be. I live in fear of another flare. And I do worry about what will happen if and when she decides to have children and has to stop taking CellCept. But I take my lead from my strong, courageous daughter, try to live one day at a time, and be thankful for our blessings.
Open communication is the most important tool in managing the school situation. Each school year, I meet with all of Amanda’s teachers, counselors, and the school nurse to explain her situation and put in place mechanisms should she have to be absent for extended periods of time. Normally, a student has to miss two weeks of school before home schooling can begin. For Amanda, if she flares, the school has arranged for home schooling to begin immediately. Likewise, if she is having a minor flare, but still goes to school, I email her teachers so they know that all is not as it should be.
Not only has Amanda’s disease affected all of us my husband, son, myself, and most of all, her but it has changed the course of all of our lives. It is thanks to our extended family and friends that we have coped as well as we have. I never hesitate to ask for help. Whether it is medical research, prayers, or just a hot cooked meal, we are surrounded by a network of people who love us and generously offer their special gifts to help us through the difficult times and celebrate the victories.
Since PV is so rare among the general population, and even rarer among young people, finding a dermatologist with
experience treating it was not easy. We found Dr. Anhalt through the IPPF, and were quite willing to make the 3-hour trip from Pittsburgh to Baltimore to see him. My concern was what to do if Amanda had an emergency illness. I couldn’ go to Baltimore every time she got a cold. So I worked closely with Amanda’s pediatrician, Dr. Paul Trainer, and Dr. Anhalt, putting them in contact with each other, and with me, via email, so that we are a three-person team managing Amanda’s health.
This issue of the Quarterly focuses on our theme of Support. Support is one of the founding principles of the IPPF, stated in our Mission as: The IPPF provides direct access to innovative and effective support that:
Interestingly, this issue of our Newsletter became one
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of our most jam packed when we announced the theme. What I loved, as all the stories came in, was the many different ways people have found to provide support to each other through the IPPF.
Marc answers specific questions and cheers people on in the Forum; Mindy offers to use her expertise to promote donor development (Bio page 4); Amanda submits an English paper for a Senior project, on rare disease funding challenges, and takes the message to her high school (www.pemphigus.org/materials); Cathy has gathered more than $5,000 worth of items for auction at the Annual Meeting (www.pemphigus.org/AM2009); Rebecca finished the video check it out at www.pemphigus.org/youtube (there’s both an educational one and the tear jerker); Badri and Miki edited d endless dry medical documents and fun new brochures; Will developed a News and Info page on the website (www.pemphgius.org/news); and Janet has undertaken a rigorous Professional Health Coach Certification Program which will result in her accreditation by the American College of Sports Medicine, and will allow her to expand her coaching services to even more patients in need (www.pemphigus.org/hmp). Many support us with direct donations.); our insurance coverage advocate, Brian, secured IVIg and/or Rituxan for two extra-challenging insurance coverage puzzles for IPPF members (see page 4), Alan and Terry made presentations at dental professional Seminars/Conferences to educate about P/P (pp. 5 and 6); Madeline and Danielle created new Wound Care information sheets (
When I was a Trauma Chaplain we had a few standard prayers that could be of service no matter the spiritual (or not) background of the person being ministered to. My favorite ended with, When the cold dark wind blows through the hollows of your soul, gather together and share what you know to be true.
It’s a scary, rainy night here in Sacramento as I write this; the economy is troubling and someone today was told they have pemphigus. All we have to comfort us on this crazy journey is the compassion shared by another. The magic thread, the uncommon bond, that draws each of you into the service of other P/P patients is the deep understanding that comes because you also have walked that path, and can share what you know to be true.
I look forward to the gathering together part, at the IPPF Annual Meeting, April 24-26, 2009.
One of our volunteers soliciting gifts for our Annual Meeting auction mentioned to me that several of the places she has contacted asked the question, ?Does this disease affect kids?? When they asked her that question, she thought, ?Yes, of course it affects kids.? She remembered how difficult it was on her daughter and her whole family when she was diagnosed. I immediately understood what she was talking about. Just because a child doesn?t have a disease, doesn?t mean that the ?kids? are not affected.
As we all know, people and companies are more inclined to give to organizations that involve diseases that affect kids. Also, getting any kind of media acknowledgement without cute kids is very difficult as well. And, although we do, unfortunately, know children and young adults who are diagnosed each year with one of our diseases, most of our patient base is people over 40.
We often overlook the effect that a disease like pemphigus or pemphigoid can have on a family. It is so important that not only should the person with our diseases get the support and care that they need, but that kids, spouses, significant others, grandparents, and close extended families have the opportunity to find sympathetic ears and hearts for their needs as well. Sometimes, diseases can be more devastating to the families than the patient themselves.
When I was diagnosed some 25 years ago, I was raising my 6 year old daughter alone. Although I had the support of family, my daughter was emotionally devastated. She had lost her father when she was too young to remember him, but nevertheless, he had made his imprint on her life. She started exhibiting out of character behavior which was very concerning, so I brought her to a child therapist. After 3 months of therapy, she revealed to the therapist that she was afraid that she would be an orphan, and who would love and take care of her? I told my dermatologist at the time, Dr. Clarke, what had transpired and she said, ?Bring her in. I?ll talk to her.? So I brought my daughter to see Dr. Clarke. Dr. Clarke went to her desk and took out her business card. She said to my daughter, ?You?re mother is not going to die. I want you to take this card. It has my name and my phone number on it. If you have any questions about anything, you just call me.? When we got home, she put the card in her clothes draw where it sat for many years. Her uncharacteristic behavior stopped. She never used the card, but just knowing that the card was there made all the difference in the world.
Our diseases affect everyone in our families and if anyone ever asks whether your disease affects children, the answer is always ?Yes!? Emotional issues can sometimes be more difficult than physical ones. At our Annual Meetings, we always have a Caregivers meeting during our Sunday event. We have a section on the website for Caregivers. From my observations, women seem to be more open to therapy than men, but there is nothing shameful in seeking help. Communication is so important in keeping families together.