Yearly Archives: 2011

On Saturday, October 6, 2012, the Los Angeles Support Group held their annual gathering. We met at the Santa Monica Library and 22 people attended. Some had to drive almost two hours to attend, but all agree it was well worth it!
Attendees got to meet Lee Heins, Sonia Tramel, and Greg Wright from our Board of Directors, Senior Peer Health Coach Marc Yale, and ask guest speaker Dr. Vanessa Holland from the UCLA Dermatology Department disease and treatment questions. Dr. Holland said she looks forward to speaking at future meetings as well.
Lots of questions were asked and many focused on rituximab (Rituxan®) treatments and the use of CellCept® and IVIg. It was a terrific meeting because so many issues were covered. Everyone who joined us left feeling more informed and increasingly hopeful.
Prior to the start of the meeting, refreshments were provided by 2012 Annual Meeting Platinum Sponsor KabaFusion — delicious breakfast sweets and coffee! Joining the LASG was Nate Hughes, a representative from KabaFusion. Nate gladly handed out information and answered questions.
After the meeting, many us went to Panera Bread for lunch. Thanks to Marc, Panera Bread generously donated a percentage of each person’s bill back to the IPPF.
If you are interested in more information about the Los Angeles Support Group, please email
The Bay Area Support Group meeting was held on September 29, 2012 in Palo Alto, CA. The enthusiasm, energy, and support was incredible! IPPF Medical Advisory Board member and 2013 Patient Conference host Dr. Peter Marinkovich led a midday discussion for more than 40 attendees on a beautiful Bay Area Saturday. Sponsoring the meeting were Dr. Mike Rigas (KabaFusion) and Susan Billat (BIOFUSION). Also in attendance were IPPF CEO Will Zrnchik, Senior Peer Health Coach Marc Yale, and a local member of the IPPF Board of Directors, Dr. Badri Rengarajan.
Before the meeting began, the room was buzzing with questions leading to an impromptu Q&A session. Many people took part, but the questions seemed to be answered by one woman. When Will introduced her, heads turned and the room gasped: IPPF Founder Janet Segall was in the audience.
Will told the audience about Janet and her work with the IPPF while she modestly smiled with a tear in her eye. All of us owe Janet a debt of gratitude for the work she did to bring pemphigus and pemphigoid to light and create an organization that flourishes thanks to her early care.
Afterwards, Dr. Marinkovich presented on the disease and treatments and opened the floor to questions while attendees enjoyed lunch. He could hardly eat his lunch because of so many questions, but he didn’t seem to mind at all.
The Bay Area Support Group has decided to meet quarterly on a Saturday around noon at the same Stanford Redwood City Clinics facility. Ten people volunteered to help with the 2013 Patient Conference, but we could always use more volunteers!
Thank you to Stanford University for donating the facilities, and to Will and Marc for their assistance in putting together this forum. And a special thank you to Dr. Marinkovich, Dr. Rigas, Susan, and Janet for their support and time.
If you are interested in more information about the Bay Area Support Group, or volunteering at the Patient Conference, email at
As I am writing this, I am trying to hold onto a delicate balance of my clinical psychology practice and a special birthday party/fundraising event. The expression “it is better to give than to receive” means much more to me, and when I see a window of opportunity, I go for it.
Normally, I skip having an actual birthday party, opting instead for a small group of close family and maybe a few friends, a casual evening, and cake. This year was different.
Initially I considered a nice vacation for my husband and me because this birthday was a bit of a landmark for me, and I did want to do something special. However, the more I thought about it, the more I realized that I really wanted to celebrate the fact that I was still alive. This reason was more evident as I recalled the past 12 years and my diagnosis with two very rare autoimmune diseases, amidst the losses of my parents and some family and friends. The question was: How could I celebrate my special birthday and life, AND use this as an opportunity?
A seed was planted.
When we think of planting seeds, many people immediately think about the Spring. Here I am in early mid-Fall having my “a-ha” moment. Interestingly enough, my favorite flowers have been tulips since my first visit to The Netherlands more than 40 years ago. Unlike most flowers, tulip bulbs are planted in the Fall and then come up beautifully in the Spring. I love how these flowers normally bloom earlier than most, and at night or in darkness, they close to protect themselves, reopening when it is once again safe.
A seed was beginning to metaphorically grow in my mind. Why not use my birthday to have a special party/fundraiser/event where guests would be asked to not bring me a personal gift, but rather contribute to a charity of my choice?
Great! Now I was going to have a big party and not just a small, intimate gathering. What would be my first step?
I began to assemble a list of family, friends, acquaintances, colleagues, and the physicians who have been helpful during my journey. The list was a lot longer than I expected.
I kept going through the list. I couldn’t find anyone I didn’t want to include in my celebration. And to compound the issue, I found myself adding more and more names. I even added some out-of-town people, including my life-saving physician, Dr. Razzaque Ahmed from Boston. My original dermatologist in Pittsburgh, Dr. Judy Small, had worked closely with Dr. Ahmed over the phone during the first six years of my treatment (until I had to change doctors because of insurance and facility/provider changes). How could I have a celebration of LIFE and not invite the doctor whose ‘alternative’ treatment of IVIg was the reason I was alive? Remember, IVIg was very controversial back in 2001.
Since it was for charity, I was willing to go that extra mile. I am not sure I was using my old and trusty cognitive model — without emotional interference — but I was determined to stay on track. Finally, I decided on a private club where a dear friend (and a Vice President at PNC Financial Services, a 2012 Annual Meeting sponsor), had generously offered to sponsor my birthday event.
I enjoyed creating the menus, invitations, and RSVPs. Thanks to some technical help from my husband, everything got printed and mailed. Will Zrnchik, our CEO, set up a special Web page for the party so people could donate online.
The RSVPs started coming in and more people than I expected were planning on attending! This was getting big. What about entertainment? I realized I know a lovely and accomplished young woman who is the founder and creative director of a local ballet company whose studio was originally leased to Gene Kelly before he went to Hollywood! She had choreographed a perfect piece just for my celebration that could be performed by two ballerinas.
This effort took a lot of time and effort, but it was a night to remember. The party brought together people who did not know each other, and might not see each other again, but who kept telling me they had been at the “fun” table. The funny part is they were all at different tables!
I was blown away by Dr. Ahmed’s attendance and the speech he gave to educate the important people in my life about the seriousness of my particular diagnoses (many were not aware of my conditions). Even my normally quiet, engineer-minded husband gave a very beautiful and emotional toast in my honor. I swear that if I didn’t also have Sjogren’s Syndrome I would have cried my eyes out!
Many of my guests asked me to make it a yearly event! While flattered, it probably won’t happen at the level of this one, but I will definitely have smaller cocktail-like parties at home and continue to request donations in lieu of gifts.
It feels so wonderful to have both a landmark birthday and a memorable evening and celebration with friends and family who donated to IPPF. The reality is anyone can do this on their own comfort level.
The bottom line here is from that original “seed” came an evening I will never forget and will help others because of generous donations. The icing on the cake is most of my doctors got to meet each other face-to-face for the first time. And, it looks like Dr. Ahmed will be invited to talk to Pittsburgh doctors, residents, and others in the near future with a hope that it could drive some to study and research pemphigus and pemphigoid.
I am thankful to the generous local merchants who provided many items, services and gift certificates for the Silent Auction.
Knowing that this fundraiser can be repeated in small ways over the coming years gives me far more happiness than any one-week vacation could possibly have given me. I am not special for having planned this event, but I get a warm and wonderful feeling just knowing that I was able to embrace a new way of giving. I can absolutely validate that it is far better to give than to receive.
If you have an idea, let that seed evolve. See where it takes you. We can find new ways of giving — whether with special skills, money, frequent flyer miles, volunteering time and services for one of the Foundations’ many committees, educating people, or supporting others emotionally. The list is endless, and you will feel better knowing you are making a contribution that makes a difference.
I am writing this shortly before Thanksgiving, and I will appreciate it more than usual. In recent years I, like many of you, have experienced many losses (people, pets, previously taken for granted good health).
But in many ways my life is now fuller. I have met amazing people and physicians whom I never would have met. As 2012 comes to an end, and the new year starts, move forward in your own way and make a difference. Your life will be fuller for it. That is a promise.
Just plant a seed.
A diagnosis of pemphigus or pemphigoid typically means some sort of systemic medication. Many doctors start a patient off with prednisone for the first couple of weeks, and then add another drug to help reduce the dose of prednisone. When I was diagnosed some 30 years ago, prednisone was the only drug being used. Imuran had just started appearing on the scene. My doctor didn’t know if it was an option, so we tried methotrexate; and that caused too many problems.
Being diagnosed with PV at 37 was not something I handled very well. It took time.
A lot of it.
I was living in Berkeley, California, and alternative medicine was starting to become very popular in the area. I was having difficulty handling prednisone so I started augmenting my healing with Chinese medicine, Biofeedback, Linseed oil, and soybeans. I tried tea that tasted and smelled horrible (my roommates were not too happy about that). I drank a tablespoon of Linseed oil every day, and cooked raw soybeans that I made into soybean patties and ate twice a day. I don’t know scientifically if any of the things I did back then worked, but they helped me live better with prednisone. Along the way, I learned some incredibly helpful relaxation techniques I still use to this day.
After many years living and learning as much as I could about the diseases, I know it is important for someone with pemphigus or pemphigoid to avoid things that might enhance the immune system, such as alternative medicines, vitamins, or foods rich in spirulina and echinacea. These boost your immune system and can negate the effects of immunosuppressive drugs being used to get disease activity under control. Typically a person uses alternative medicines and diet to try and stabilize the immune system. My personal advice is that if you decide to try Chinese medicine, make sure none of the ingredients will harm you in some way. A specialist should know the right combinations to use but always discuss this with your physician BEFORE making any changes to your diet.
Dr. Sarah Brenner (Israel) conducted small studies several years ago on certain foods and how they affect pemphigus and pemphigoid patients. Even though they were not double-blind studies and were very small in size, she was able to theorize that foods from the Alum group might cause problems for people with pemphigus. These foods included onions and garlic. Mediterranean countries tend to eat a lot of onions and garlic, so determining if they pose a problem for you might be challenging.
I am very fond of both onions and garlic so I decided I would test myself. At the time I was clear of lesions but still on drug therapy. For three days, I ate two small cloves of garlic a day on “rice cake pizzas”. Three days later I noticed I had a couple of new lesions. I stopped eating the garlic and two days later the lesions disappeared. I waited several weeks (enough time for the garlic to leave my system) and I tried it again. The same thing happened, as well as a third time.
I came to the personal conclusion that eating a large amount of garlic consistently was not a good idea for me. I found the same thing happened with large amounts of onions and, believe it or not, sourdough bread. I discovered testing foods myself lessened my overall disease activity and allowed me to identify what foods and approximate what amounts were going to result in lesions.
One of the most helpful things I tried was biofeedback and Transcendental Meditation. Before I was diagnosed with PV, I went to the Transcendental Meditation Center in San Francisco and learned some methods for relaxation. Biofeedback showed I was able to significantly reduce my stress quotient. Because of that early success, I recently became certified in Hypnotherapy. Now, I use hypnotherapy on myself and to help others reduce stress.
There isn’t any disagreement that stress reduction is an important part of healing from disease — not just pemphigus and pemphigoid, but any disease. Dr. Terry Wolinsky McDonald (IPPF Board of Directors and a regular Quarterly columnist) has written many articles on coping with stress. I strongly agree with her that it isn’t about the stress itself as much as it is the way we deal with the stress. There are many different methods of stress reduction so finding one that fits into your life is a key to effective healing and coping.
Sometimes being proactive with disease can be difficult. Once the medicine starts to work, many people want to pretend nothing was wrong in the first place. Some simply take their medicine, eat whatever they want, and avoid physical activity. I’m guilty! We just pretend we’re fine hoping a positive attitude will be enough. Having a positive attitude is extremely important, but pretending we don’t have to take care of ourselves can be hurtful. The drugs for these diseases can cause damage to our bodies and a proactive, positive attitude can help promote healing faster.
I have been in remission now for about 15 years, 10 drug-free. I watch my eating habits and notice any changes certain foods cause. Taking prednisone off and on for 10 years has had a negative effect on my spine and joints, but I find ways to exercise: mild yoga, walking, hot pool aerobics, and stretching — and last but not least — relaxation.
I believe a comprehensive approach to healing not only helps us heal our disease, but can help us keep a positive attitude as well.
‘Tis the season for giving thanks and celebrating the holidays with those we love. Things can become so hectic that we forget to thank those around us for being a part of our lives.
Personally, I am thankful for my parents and their advice over the years. “Bird” and “Pops,” as they are affectionately referred to, were never short on tough love or supportive words. I thank my lovely wife, Christina, for her loving support and encouragement that make me a better person. I am thankful for my children, Will, Haley, Alannah, and Noah, and hope each of them support causes dear to their heart.
I thank Janet Segall for bringing me into the IPPF and our Board of Directors for giving me the opportunity to work with our wonderful coaches, advisors, and patients around the world. The underlying theme: I am thankful for the support of others and do my best to pay it forward.
The IPPF does more than support patients — it supports caregivers, family, friends, and physicians. Thank you to Marc Yale and our Peer Health Coaches who collectively have closed more than 500 cases this year answering calls, emails, and postings from people all over the world. Many of our “veteran” patients still remember that scared feeling they had before calling the IPPF and how relieved they felt after receiving support and information. They now pay it forward, helping others in our community.
Recently, a newly diagnosed patient’s daughter called the office. You could hear the relief in her voice when I told her, “Your mom will be fine. Now let’s focus on helping you understand the disease and treatments.” After, she sent me an email thanking me for the information, but more for just taking the time to talk to her. I replied: “No, thank you for calling.”
Yes, thank you for the calls, emails, and interactions that allow us to support one another. You should feel good knowing your involvement helps others at a time when they need the IPPF most.
From my family to yours, have a safe and joyous holiday and a Happy New Year!
Chicago, USA: The IPPF participated in the Drug Information Association’s first Patient Fellowship Program, meant to enhance the participation of patient advocacy groups at DIA in order to develop, strengthen and support patient group collaboration with healthcare policy makers, medical professionals, industry representatives and academia.
The IPPF was one of 15 patient organizations selected out of over 50 applicants to receive a grant for all attendance costs. I attended along with CEO’s of other patient groups such as the Myasthenia Gravis Foundation and the Pancreatic Cancer Action Network.
The goal for everyone was to try to strategize ways that we can bridge the gap between what patients hope and fear about clinical trials (Clinical trials are used to explore if medications or treatments are safe and effective. For example, they might have someone keep a food diary and look for signs of a dairy allergy. At the more extreme end, they might follow a pemphigus patient taking methotrexate to see impact there.) We also worked in groups with researchers at universities and industry to discuss how they might improve things for patients who are participating.
We discussed dis-incentives to patients to participate such as scary media stories, uncertainty about how the process works, lawyers and legalese in complicated forms, fear from family members, fear that might not get a “real” medicine, too much time or expense.
And yet, every where I turned I heard patients speaking out about how much they had gained from participating in trials. In the most dramatic cases I heard stories of some who got better medical care than they could have afforded and some who used treatments they otherwise wouldn’t have been allowed.
On a more mundane but extra powerful level participants talked about how good it made them feel to know that they were improving science and therefor improving hope for anyone who comes after them.
A true sense of their efforts on behalf of a wider community.
Around here we call that, The Power of One!
Who am I? I’m Jack Sherman, Peer Health Coach with the IPPF. I have a degree in music education and once played bass professionally. I have packed fish, was an award-winning photographer, and worked as IT technician for several companies in the Seattle area. Currently, besides being a Peer Health Coach I have my own greeting card business, and enjoy helping others do the same. I think the common denominator with my passions are two things: creativity and helping others. That is a commonality that these very different fields have.
I have an awesome 19 year old son, Cameron, and a loving partner, Julia. I was born and raised in the Seattle area. Currently I live about 25 minutes East of Seattle in Issaquah. I love Issaquah; it’s close to the city, but also close the the mountains. Issaquah is known nationally for at least one thing: it is the corporate headquarters for Costco. I got your attention now.
I was diagnosed with pemphigus vulgaris in 2002. I wanted to become a PHC because I wanted to help others weave their way through this disease.
I was actually scared to contact the IPPF when I was early in my treatment. Once things were under control, I was ready to give back. I was so charged-up to find that there was a small — but powerful — organization dedicated to supporting me and others with this rare disease that I had to get involved! My PHC, Marc Yale, helped me become a PHC…he is an awesome guy, as is the whole team! I’m here to help and would love to answer your P/P questions. You can reach me by email at
The IPPF would like to extend our deepest Congratulations to Carolyn and the honor of being named Patron of PEM Friends. Carolyn’s work over the years has been both instrumental and inspiring to others around the world.
Carolyn received the 2011 IPPF Star Award for Patient Support during this year’s Annual Meeting in Detroit (she was unable to attend). Congratulations Carolyn and PEM Friends! We wish you many more successful years!
My name is Singe and I am a 22-year-old girl diagnosed with PV 5 years ago. I am from Denmark and there is not a lot of information about pemphigus. Because of the missing information and lack of success in my treatment, I turned to the Internet for help. It quickly became clear to me that the information that is online is mostly in English, and one of the websites that popped up on Google was the IPPF website.
For a long time I just used the website for information, I didn’t use the forums system and the opportunity for sharing information with other people in the same situation.
After a long period of downtime in my treatment of my PV, I decided to do something about it myself – I didn’t want to sit back and wait for something to happen any longer. I posted 2 or 3 short messages on the forums, and within a week I got contacted by Sharon Hickey who is a Peer Health Coach in the IPPF – and ever since she has taken me under her wings.
The 2011 IPPF Annual Meeting
It is a long way from Denmark to Detroit, and that definitely made me and my family think twice about attending the meeting! :) After some thinking, and the fact that no new attempts to treating my PV were going to happen – we decided to travel the distance and collect information.
My mother and me left Denmark not knowing what to expect from this trip – and not knowing what to get out of the Annual Meeting.
Friday evening was the first time we met with IPPF, the people in the organization and other patients. We were greeted with such warmth and kindness that it blew us a little away. The welcome reception lasted for 3 hours, and what a 3 hours! In that time I got to talk with people who have PV themselves, which is an experience that means much to me. For the first time of the 5 years I have been diagnosed with PV, I felt that someone really understood me. I didn’t have to explain how it hurts in my mouth, I didn’t have to explain all the emotions that come with being diagnosed with such a rare disease – I felt a connection with these people right away.
Friday evening was very overwhelming for me. I got to tell my story to people who really seemed to care, and knew what I was talking about. When the evening was over I had made contact with other patients and doctors.
One of the doctors I met at the annual meeting was Dr. David Sirois from New York. I told him my story, and that I had never been in remission for five years – still on prednisone, and he was so kind to take me in for a consultation the following week, when I came to New York.
The consultation was very giving because Dr. David Sirois really cared and was willing to get in touch with my doctor in Denmark. He also gave me some tips to use in my daily routine of keeping my mouth and gums clean. Finally he made a treatment plan, that I am following now – and so far it is going very well.
After this trip I almost feel like a new person. The whole experience of the annual meeting has been so informative, and I have learned that you don’t have to put your life on hold even though you have a rare disease. It is possible to get better, you just need to get the right information, and that is something the IPPF and an annual meeting can give you. It was my first meeting, and I can only recommend other patients to go – it will change your life.
I would like to thank all those who attended in the meeting in Detroit, for making my trip so positive and giving. A special thanks to Dr. David Sirois for taking your time to see me and to Sharon Hickey my dear Peer Health Coach.
“I couldn’t have done it with out you”.

Signe Horn Thomsen

Our Director of Communications, Will Zrnchik, created this great new logo to identify the relationship between the KJT Group (a professional, medical, research firm and the IPPF on a project currently undertaken by the IPPF Board of Directors and IPPF Medical Advisory Board) and the IPPF to accurately and scientifically document the pathway(s) to an accurate diagnosis of pemphigus or pemphigoid. We hear from so many folks out there about their scary and painful path to finally getting diagnosed, including, sometimes, diagnoses that are wrong or people shuffled off to some other doctor (or no one at all) while the disease blows out to critical levels before someone finally thinks of P/P, or before neglect results in a much more difficult and damaging treatment course.
But, in order to seek funding to study a problem, donors and grantors require that one can accurately document the “need”, we need the evidence of this problem and, while we are at it, we are seeking answers to where/why doctors are making these errors so that we can target our education at critical “opportunity spots” where things go awry — for example where doctors may be lacking information on effective visual/clinical observations or use of appropriate diagnostic tests, or not have resources for an appropriate referral.
Once again WE NEED YOU! In these extremely rare diseases, for us to get accurate, significant data it requires that virtually everyone participate to help everyone. This is sort of the other side of the coin from the Power of One, “One” won’t do it this time; now we need the power of 100. We must document 100 “paths to diagnoses” in our online survey. The trick!? We can only survey folks who were diagnosed in the last 18 months, to prove that these delays are a current and ongoing problem.
If you have been diagnosed in the last 18 months we need your help. If you got a personal link, please do fill it out right away (we’ll stop re-“inviting” you if you do it!). If you did not get a link, but fit the criteria, please sen Will an email at will@, or 916.922.1289 x 1003 and he will send you one.
Together we can gain greater information and have a larger impact. Let’s!