Yearly Archives: 2013

The average P/P patient sees five doctors over 10 months to obtain a diagnosis. The IPPF Awareness Campaign strives to change this statistic by reducing the amount of time it takes a patient to receive a pemphigus vulgaris (PV) or mucous membrane pemphigoid (MMP) diagnosis.

We are excited to share the Awareness Campaign’s new logo and slogan, Put it on Your RADAR. The IPPF will encourage dental professionals to put PV and MMP on their radar. To do this, we are using different methods to increase awareness, such as conference presentations, community outreach, and dental expert reviewed materials.

The Dental Detective

The IPPF partnered with four other autoimmune disease foundations and submitted a joint conference presentation proposal. We are happy to announce our proposal was accepted and will be presented at the American Dental Association’s Annual Meeting on October 9, 2014, in San Antonio, TX. This was a very competitive process and we are thrilled to use this opportunity to spread awareness.

Dr. Vidya Sankar, DMD, MHS, and Sjögren’s Syndrome Foundation Board Member, will present on “The Dental Detective: Investigating Autoimmune Diseases.” This is a wonderful way to get information on PV and MMP, as well as other autoimmune diseases, out to an entire dental team.

Awareness Ambassadors

Tina Lehne, Volunteer Awareness Ambassador Coordinator, is working hard to bring the Awareness Ambassador program to life. The first set of activities will include outreach to dental professionals. This may include one-on-one meetings or presentations to dental classes or societies.awareness78_opt

Ambassadors sign up for a one-year commitment and receive training prior to engaging in awareness activities. If you are interested in becoming an Ambassador, contact awareness@pemphigus.org.

Dental Advisory Council

We are pleased to introduce the formation of the IPPF Dental Advisory Council (DAC). The DAC provides critical review of dental materials related to the Awareness Campaign. It is comprised of both dental professionals and students. We are very lucky to have such an expert panel devoted to PV and MMP awareness.

And the Oscar goes to…

Becky Strong, IPPF Patient Educator (pictured below), is the first recipient of the IPPF Awareness Award, appropriately shaped like an Oscar for her starring role in the Patient Awareness Video (release date coming soon). Becky has devoted countless hours to P/P awareness by presenting to dental schools and sharing her diagnosis story to help reduce diagnostic delays. Thank you, Becky!

Funding Announcement

The IPPF is happy to announce continued funding from the Sy Syms Foundation (www.sysymsfoundation.org). The Sy Syms Foundation awarded the IPPF’s Awareness Campaign with a check for $75,000. These funds will go a long way in our efforts to spread awareness and reduce diagnostic delays for all pemphigus and pemphigoid patients.

Thank you to the Sy Syms Foundation!

The IPPF encourages our Community to get involved with the Awareness Campaign. If you are interested in learning more about the campaign or getting involved, contact awareness@pemphigus.org.

78_mac-slider2_optFall is a time most clothing designers live for. They spend months creating new styles to be modeled on runways in New York, Milan, and Paris hoping to have the “must have” look of next Spring or Summer.

This Fall we present a new look from Sacramento tech-firm Uptown Studios (uptownstudios.net) for the IPPF that will be on computers, tablets, and phones around the world. After months of sketches, wire-frames, and coding, I am very excited to announce our new website: www.pemphigus.org.

The new site is easier to navigate and features resources and support at your fingertips. The “responsive” design keeps its look and feel no matter what screen size. We added accessibility features like variable text sizing and a high-contrast display. Our social media links, search box, and donation button are conveniently located at the top of each page. Our home page features a testimonial section. Read what others have to say about the IPPF. You can also submit your own story to be shared on our site!

A big part of our mission is support. In addition to the Email Discussion Group, RareConnect community, and social media sites, we added Desk.com support.

Our Patient Support team can now provide fast, awesome customer service on a modern, flexible platform over various channels. Patients and caregivers can find answers in the self-service portal using existing FAQs, email questions to our PHCs, or post to the general community. And when they are online, you can chat live with a PHC!

I am also excited about the Awareness Campaign portal currently being developed. It will contain resources and information for dental professionals and Awareness Ambassadors. Our goal is to keep P/P on the RADAR of dentists and provide them with tools and training needed to reduce P/P diagnosis time and increase your quality of life.

For some people, the end of Summer means the start of school. Here at the office “Back to School” means helpful happy interns. Several interns from Sacramento State University and Cristo Rey High School (Sacramento) are working on website articles, informational materials, the Awareness Campaign, and more. Our Sac State interns are in health-related programs and our high school interns are part of a Work-Study program. The work done by them saves the IPPF thousands of dollars each year while giving them real-world experiences.

Volunteerism is on the rise! Daphna Smolka is working with us on a P/P friendly cookbook that will be also be a P/P Community effort. Tina Lehne is spearheading the Awareness Ambassador effort and preparing the program’s requirements and materials. Marketing guru Edie DeVine is helping with our public messaging and press releases. Dr. Maulik Dhandha is working on a paper reporting on the diagnostic delays of P/P we hope to publish in an academic journal.

And speaking of journals, members of our Medical Advisory Board joined 30 other physicians in finalizing an MMP consensus statement providing clearer definitions and outcome measures for accurate and reproducible definitions for disease extent, activity, outcome measures, end points and therapeutic response. Thank you Prof. Dedee Murrell and Dr. Victoria Werth for leading this effort.

This issue of the Quarterly is another great one! PV patient Martha Cusick was so happy with the help she received from her Peer Health Coach, she set a goal to fundraise for research and awareness (p. 4). And what do you do when you need a cancer treatment, but getting it will cause a severe flare? Read Joan Blender Ominsky’s story on page 15.

The Awareness Campaign has a new look, more help, and a catchy slogan. Kate Frantz keeps you up to date starting on page 6. Clinical psychologist and PV patient Terry Wolinsky McDonald explains the Nuts & Bolts of Depression (p. 7). The discovery of VH1-46 is the topic of two articles (pp. 8 and 9). Two P/P experts discuss the importance of measuring patient quality of life (p. 11). And we have another delicious Vicky Starr recipe on page 19!

Lastly, I hope to see you in New York for our 2015 Patient Conference. The Committee is busy finalizing the date (end of April) and venue (near Central Park). Keep an eye on your mailbox and inbox for more information in the coming months! I promise this event will be BIG!

To Anna, the IPPF means hope when all hope was gone. For Steve, the IPPF means discovering hundreds of other patients when he thought he was alone. And Jack — Jack says he owes the IPPF his life. To me, the IPPF means helping my ‘pem-family’ find comfort, strength, and support through our dedicated staff and volunteers. Phone calls and emails come in to our offices every day. Between the new patient calls and flare-up questions, there are little rays of sunshine that bring hope. Thousands of people around the world re- member their first call, how the IPPF was there for them, and what the IPPF means to them. Now it’s your turn. Please contribute to the IPPF this Holiday Season. Your donation funds essential, life-saving programs and services such as the Regis- try, Peer Health Coaches, Awareness, and more. And now you can be a Sustaining Donor! Our organization is lean, so a higher percent- age of your money goes directly to the programs we offer and the re- search initiatives we sponsor. You can safely donate online at www.pemphigus.org/give2012 or use the form below. As I look back over the past year, I remember how many members of my pem-family I have talked with and helped with the gift of hope. I know for our Peer Health Coaches that number is even higher. This holiday season give the gift of knowledge, support… and hope. Happy Holidays and Happy New Year!
A diagnosis of pemphigus or pemphigoid typically means some sort of systemic medication. Many doc- tors 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 start- ing to become very popular in the ar- ea. I was having difficulty handling prednisone so I started augmenting my healing with Chinese medicine, Bio- feedback, Linseed oil, and soybeans. I tried tea that tasted and smelled horri- ble (my roommates were not too hap- py about that). I drank a tablespoon of Linseed oil every day, and cooked raw soybeans that I made into soybean pat- ties 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 im- mune system and can negate the ef- fects of immunosuppressive drugs being used to get disease activity under control. Typically a person uses alter- native medicines and diet to try and stabilize the immune system. My per- sonal 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 mak- ing 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 gar- lic. Mediterranean countries tend to eat a lot of onions and garlic, so deter- mining 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 no- ticed I had a couple of new lesions. I stopped eat- ing the garlic and two days later the lesions disap- peared. 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, sour- dough bread. I discovered testing foods myself less- ened 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 bio- feedback and Transcendental Meditation. Before I was diagnosed with PV, I went to the Transcenden- tal 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 cer- tified 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 Direc- tors 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 ma- ny different methods of stress reduction so finding one that fits into your life is a key to effective heal- ing 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 yo- ga, 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 love- ly 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 won- derful coaches, advisors, and patients around the world. The un- derlying 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 caregiv- ers, 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 in- formation, 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 involve- ment 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! From the Top Will Zrnchik Chief Executive Officer will@pemphigus.org PS: Help us continue our important work by donating today. Contribute online at www.pemphigus.org/give2012 or use the form on page 13. International Pemphigus & Pemphigoid Foundation2 POSTMASTER: Highway #100, Sacramento, CA 95833, United States of America. The Quarterly is published four times a year in the Spring, Summer, Fall and Winter and provided free of charge to donors as a thank you for their support. The material presented in our journal is not intended as medical advice. Readers are urged to consult their physicians before making any changes in their health regimen. The contents of the Quarterly cannot be reproduced or copied without written permission of the IPPF. All inquiries regarding material from this publication should be directed to: IPPF, Attn: Rights and Permissions, 1331 Garden Hwy #100, Sacramento CA 95833, USA. We are able to reproduce articles and provide electronic copies of issues. The cost for this service varies based on the amount and type of media preferred.  If you are interested in submitting a story for print consideration, please contact the IPPF prior to submitting your story. Our staff will assist you in preparing your article for future publishing in an issue that relates to your topic. BOARD OF DIRECTORS David A. Sirois, DMD, PhD Rebecca Oling, MLS Lee A. Heins William Gerstner Dan Goodwill Badri Rengarajan, MD Sonia Tramel Mindy Unger Terry Wolinsky McDonald, PhD J. Gregory Wright, MBA MEDICAL ADVISORY BOARD Victoria Werth, MD Sergei Grando, MD, PhD, DSci Russell P. Hall III, MD Takashi Hashimoto, MD Michael Hertl, MD Pascal Joly, MD Marcel Jonkman, MD, PhD Neil Korman, MD, PhD M. Peter Marinkovich, MD Dedee F. Murrell, MD Animesh A. Sinha, MD, PhD David Sirois, DMD, PhD Robert A. Swerlick, MD ADMINISTRATIVE STAFF AND SUPPORT William Zrnchik, MBA, MNM Kevin Cruz PEER HEALTH COACHES Marc Yale, Sharon Hickey Jack
Do you suffer from severe limitations in your dai- ly activities because of your disease? Then you are among the 11% who are able to minimally per- form regular, daily routines. And if you suffer from any limitations in your daily activities as a result of your medication or treatment, you are among the 68% who said they have mild, moderate, or severe limitations. We know because over 700 people told us so! The IPPF Registry (www.pemphigus.org/registry) provides us with a patient’s diagnostic and treat- ment experience information. With more data, the IPPF will be in an influential  position with policy makers and insurance providers. During the 2012 Annual Meeting, IPPF President Dr. David Sirois said, “The thing that empowers an organization is information.” This simple statement captures the IPPF’s goal of advocacy and awareness: providing information to clinicians, researchers, and insurance providers to make more informed de- cisions with regards to pemphigus and pemphigoid patients. Dr. Sirois challenged attendees to join the Regis- try. Now, I am asking you to do the same: JOIN THE REGISTRY. We need your help. “That registry is vital to our organization’s posi- tion, and our next step is to publish these findings in peer-reviewed journals, such as the Journal of In- vestigative Dermatology.” Once we do that, other scientists, researchers, and clinicians can use this important data so we can change perceptions and practice to benefit patients everywhere. Yet we have not reached our magic number of 1,000. We have 721 — out of thousands of patients around the world — who stood up and said, “I want to make a difference!” YOU can change how pemphigus and pemphigoid patients are diagnosed and treated in just 15 min- utes. Remember, your personal information is NEV- ER shared with anyone for any reason. The information we have is great, but without more involvement from pemphigoid patients, IVIg users, and men in general, we are only seeing part of the picture that could change everything.

Here are some Fast Facts from the Registry:

• 73% of all P/P patients are female

• 65% of all P/P patients have PV (11% have BP) • 11% also have thyroid disease (5% have rheu- matoid arthritis)

• 70% see only a dermatologist — even though 41% have current lesions in their throat/mouth.

As you can see, the information is compelling, but if this does not reflect you, then we need your data! The data can be segmented by gender, age, and disease type (see A Look at PV from Inside the Regis- try on the previous page). The goal of 1,000 will make our Registry the largest collection of pemphigus and pemphigoid data available to researchers. Please do your part to help patients everywhere. For more information, or to participate, please visit www.pemphgius.org/registry.

I have actively sought out meeting fellow P/P patients in lo- cations I like to travel. By doing so, I have made some great friends around the world. This past summer I wanted to recon- nect with friends in other countries. I had already planned to vis- it my closest friend in the world, Berna, who lives in Belgium. For me, these face-to-face meetings are very important. In fact, the first person I actually met face-to-face was Hermien from The Netherlands, and we found each other on the IPPF’s original dis- cussion group. Our first meeting was in April 2002 and I had just received my diagnosis the previous November. Hermien Konings took a train and met me in Leuven, Belgium. She brought my friend flow- ers and me some cereal, copies of all of the information she had on pemphigus, and a Vivaldi CD for relaxation. This was the first time either of us had met anyone with our disease, and neither of us can now remember how much we hugged one another that first day. As with other people I have met on this journey, you just seem to know that some relationships last forever. We have met on four different occasions over the last 10 years, including one PEM Friends “away weekend” at the beautiful home of Carolyn Blain in the UK. Hermien was instrumental in starting a support group in the Netherlands, and put together a major conference with IPPF Medical Advisory Board member Dr. Marcel Jonkman. In June 2012, I took a train to Amsterdam from Belgium. It felt so good to spend the day together talking, walking, and dining. We visited the new Hermitage Museum (wonderful Impression- ist exhibit) and other sights. We had a terrific day and our face- face together time continues to be incomparable. I returned to Belgium the next day with some photos — and lots of precious memories. Another wonderful person I had met was PV patient Oceane and her mom, Isabelle, at a PEM Friends luncheon in London in 2004. Oceane was then 7 years old, but beautiful and deter- mined. Since then, I had seen photos and stories about her diffi- culties and breakthroughs, but not had any contact.

During that time, Isabelle became active in the French support group. I was determined to reconnect with these special people.

The week after visiting Hermien, Berna and I traveled to Paris and to meet with Isabelle and Oceane. I quickly realized that after 8 years, young children really grow up. When I first met Oceane, she had been diagnosed with PV for two years and her doctors were worried about her being on systemic drugs at such a young age. Oceane had written about the difficulties she en- dured, even having to soak in
a tub at night just to remove her clothes. The good news is Oceane just turned 16 and is doing great! Isabelle shared some literature and material from their support group as we walked around Paris (Oceane and I definitely share a sweet tooth). It was a fun adven- ture where time passed too soon for our liking. Oceane gave my friend and me special cups used for relaxation in a Paris bistro- type of atmosphere. Saying good-bye was difficult
and emotional, but I am grate- ful to have met these wonderful people. The “I” in IPPF stands for International making these face- face meetings truly special times for those of us who are able to connect — and reconnect. These friendships carry the same un- common bond that brought us together. Crossing the “pond” was — and will continue to be — a very important part of my life. How lucky am I? My advice to you is if you have an opportunity, grab it!

With pemphigus and pemphigoid, painful oral lesions frequently occur in the mouth and throat. This causes difficulty when drinking or eat- ing solid foods. Let’s face it — it can be just painful! Assessing your individual tolerance to foods and ad- justing what you are eating will enable you to bet- ter understand which foods to eat and which foods to avoid. For many P/P patients, highly seasoned, acidic, or salty foods are irritating. As are foods that are dry, sticky, or abrasive because they can be difficult to swallow. Extremes in temperatures of liquids or sol- ids, such as ice cream or hot chocolate, may cause pain for some. In the case of severe mouth sores, I recommend using a blender or food processor. Here are a few helpful hints to remember:

  •   Drink liquids through a straw.
  •  Cook coarse or hard foods, such as vegetables, until they are soft and tender.
  •  Soften or moisten foods by dipping them in gravies or cream sauces.
  • Sip a beverage when swallowing solid food.
  •     Eat small meals more often instead of one large meal.
  • Rinse your mouth with water while eating (or use water, peroxide, or Biotene afterwards).

• Remove food and bacteria to promote healing.

Having oral lesions can present many challenges including; pain manage- ment, oral hygiene, nu- tritional intake, and your overall health. Speak with your doctor about ways to help relieve the pain. Also make sure they monitor your blood sugar levels if you are taking systemic steroids. Don’t for- get to inform your dentist of your condition and ask them to use caution when treating you. If you have difficulty swallowing, or find yourself frequently choking on food, talk to your doctor. You may want to ask to be seen by an ENT to help deter- mine the extent of your disease activity. With pemphigus and pemphigoid, the mouth is one of the most difficult areas to treat and requires due diligence. Changing your behavior and habits can be the biggest “pain” but will eventually pay off. If you need help, encouragement, or suggestions… just “Ask a Coach!”

Can you believe the 2012 Holiday Season is a few calendar page turns away? I barely remember Summer beginning — let alone ending in a few weeks.  But here we are in September and the whirlwind of activity throughout our community has kept us busy. The IPPF has a new home and our good friend and IPPF Founder Janet Segall, paid us a visit. She liked the atmosphere and accommodations and asked me to tell everyone hello, so, “Janet says, ‘Hello everyone!’” The IPPF Fundraising Committee has been successful in get- ting funds for our Awareness Campaign (see page 8). Since most P/P patients have oral lesions, this three-year awareness program targets dentists in training and in practice with the hopes of reducing the diagnosis time from the five-physician, 10-month cycle to a single visit (maybe two) during the first few months. Keep up the great work, Team! Our Registry is key to unlocking the mysteries of pemphigus and pemphigoid.

The information we have is compelling, but more information is better. I ask each of you to take 15 minutes and complete the Registry. We need FEWER THAN 300 more people to surpass 1,000 participants and give researchers a better understanding of P/P. Your contact information is NEVER shared and when we look at the responses, all we see is a number, not a name; a state/province, not an address. Can YOU help us pass 1,000 by the next issue? I think you can at www.pempihgus.org/registry. The 2013 Patient Conference (formerly the Annual Patient/Doctor Meeting) will be in San Francisco, April 26-28, 2013. The Planning Committee is looking to capi- talize on the success in Boston — and we think San Francisco is the place to do it. If you have never been to the Bay Area, there is no better time that April 2013. And if you live in the Bay Area, join us at Stanford September 29, 2012 for the Bay Area Sup- port Group Meeting (11 am – 2 pm, pemphig.us/ippf-basg-201209). The Holiday Fundraiser will be gearing up in a couple of months and I am challeng- ing each and every one of you to find one person to match your donation. Imagine if 2,000 people gave just $50 — and their one friend gave $50. These donations will af- ford us the opportunity to have more Peer Health Coaches to answer your questions, more informational materials for physician offices, more educational materials for patients – and the list goes on … but we need your help to make 2013 bigger and bet- ter than 2012. And don’t forget you can now give a monthly amount  that is automat- ically deducted from your credit card. How about giving $25 a month instead of $100 all at once? It’s just as easy and makes a big impact for us – and a bigger tax deduc- tion for you! You can always donate online at www.pemphigus.org/donate. Thank you for your continued support and we hope you enjoy this issue.