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South Florida Support Group

Nancy Corinella, SG Coordinator

On May 17th the South Florida Support Group held their second meeting. We have grown from 5 attendees to 16. Among attendees, we had those who were recently diagnosed as well as those who have had pemphigus for up to 20 years. Everyone introduced themselves and spoke about their journey to proper diagnosis. We are a small community; there were two women who had known each other from a previous support group they had attended in New York, and they now live in the same community here in Florida!
Daphna Smolka spoke about the recent IPPF Conference in New York. She made everyone aware of the matching grant that is going on right now (to the tune of $100,000!) and also touched on the importance of participating in the blood study in progress at the laboratory of Dr. Animesh Sinha [Editor’s note: Please see related story, “Donating Blood for Research,” on page 14].
There was such camaraderie in the room. Everyone was sharing information on new treatments and doctors in the area. The meeting was a huge success, and everyone left looking forward to the next meeting. Each and every person felt that they had learned something new, or at the very least made a connection with someone who understood their experiences battling this disease. ippf

If you have attended the annual IPPF meetings over the past 10-plus years, you have seen us. And even if you tried to avoid us, our team members may have hunted you down. We are the people in the white coats asking for your blood. You may have wondered as you donated, why am I doing this? What will my blood be used for? What happens with my blood and the information I provided after I leave the meeting? And why are these people asking for my relatives’ blood, too?

Why donate?
Despite recent advances in therapy, there is still no cure for pemphigus. All doctors can do for their patients at this point is to keep their immune systems at bay, in some cases more successfully than others. Clearly, more research is needed into the underlying factors of disease development and progression to really understand disease mechanisms and ultimately — hopefully — find a cure for autoimmune blistering conditions.
Our laboratory has been trying to answer questions regarding PV epidemiology, genetics, and immune function for over 15 years, and many of you have already participated in our studies. However, in order to get meaningful results using modern technologies like high-throughput screening assays and next-generation sequencing studies, large numbers of patients and healthy control subjects are needed. As you know by now, you are afflicted with an exceedingly rare condition (it is estimated that there are only thirty to forty thousand cases of pemphigus vulgaris in the United States, compared to 1.25 million Americans living with the autoimmune type of diabetes). That is why it is important for us to enroll as many patients in our studies as we can, both in our own clinics and at the IPPF annual meetings. Also, it is important to follow patients longitudinally (repeatedly over time) to investigate how disease progresses. That is why we will sometimes ask you to donate more than once throughout the course of your condition.

What is my blood used for?
If you decide to participate in our studies, we will ask you to sign a consent form and will typically draw three or four tubes of blood (that is about 20-25 ml, or less than 2 tablespoons). We will also ask you questions about your condition (disease activity, course, treatment) and your own, as well as your family’s, history of autoimmunity. You will be assigned a study identification (ID) number, and your information will be kept strictly confidential. From this point onward, your samples will only be identified by study ID. Your personal data will never be used in any communications and publications unless you instruct us to do so.
We will take your samples to our laboratory where we extract DNA for genetic and genomic studies, RNA for gene expression studies, and serum to analyze your autoantibody profiles. All samples that are not immediately used for our analyses are stored frozen in our large biorepository and can be used in future studies when needed.
While we get some data fairly quickly on your genetic susceptibility and antibody levels, most results are only meaningful if compared to data from many additional patients. It may take years for us to fully complete all follow up studies and to publish the data in the scientific literature. We do hope that, ultimately, our studies will shed some light on why you develop disease and how we can better treat it. We also hope that our scientific colleagues, both present and future, will be able to learn from our findings as much as we learn from theirs.

Why is it important for my blood relatives to donate blood, too?
PV is a multifactorial disease with a complex interaction of genes, the immune system, and the environment. While no single factor has been found that will predispose you to develop disease, it is clear that the vast majority of patients carry certain human leukocyte antigen (HLA) alleles, proteins or markers that are found on certain white blood cells that play a key role in immune and autoimmune activation. Interestingly, many family members that have not developed and never will develop disease carry the same HLA risk molecules.
Our group is very interested in exploring how family members who express the pemphigus-associated disease risk alleles (and also family members who do not express these alleles) compare to their relatives who do have the disease. We compare family members using measures such as other genes that may or may not be expressed, autoantibody levels, cytokine levels, and epidemiological data (for example, presence of other autoimmune diseases in the patient’s history). We hope that exploring these additional populations will ultimately help us understand how the immune system protects itself from developing autoimmunity.

How can I donate?
Many of you have asked the IPPF how you or your blood relatives can donate. If you are not a patient of our team or cannot meet us at the IPPF Patient Conference, the best way is to get in touch with us via email or phone using the contact information below and indicate the nature of your diagnosis and whether you or your blood relatives would like to donate blood. We will then send you a kit with the required supplies, blood drawing tubes, and instructions. You will need to find a place and a professional for the blood draw. Those of you in the medical field may know a nurse or phlebotomist; others can ask their primary physician to draw the tubes. Once the blood has been drawn, it will need to be sent back to us overnight in our prelabeled, prepaid shipping box (UPS) so that we can store the blood under the proper conditions.
We are grateful for every patient and family member who becomes a participant in our studies. We could not do our work without the commitment and support of people like you! ippf

My PV story began March 2014 and continues as of July 2015. What followed after March 2014 was a series of doctors, treatments, biopsies, and lab tests attempting to find the cause and appropriate treatment for my condition. It took five months for diagnosis and another month to locate a knowledgeable provider to establish the appropriate treatment protocol. I am hopeful that remission is in my near future.
My story with pemphigus vulgaris began just as I was turning 65 and beginning my retirement after 20 years working as an RN in an acute care hospital in Central Florida. The accumulated stress of preparing for Christmas 2013, my December retirement, and the onslaught of oak pollen season in Florida in February caused my body to revolt.
I have memories of sitting at the computer and feeling a small fluid-filled blister under my tongue. It wasn’t painful and did not burst. Eventually, though, my mouth became a haven for inflammation with large white areas. Due to my oak pollen allergy, I also suffered head congestion and drainage followed by eye irritation with redness and itching. I was taking my generic Claritin® with minimal relief. In early March 2014 I went to the walk-in clinic associated with my medical facility and was given nystatin, thinking oral thrush was upon me. With no improvement in a week, an ENT doctor prescribed a course of mouth rinses, oral antibiotics, and, thankfully, prednisone for my inflammation. A biopsy of a lesion on the inside of my lower lip came back only as negative for squamous cell cancer. Regrettably, I was yet to be tested for pemphigus. The only things I could put in my mouth were liquids. Protein smoothies were my friend. I lost almost 20 pounds — which I could afford to lose, thank goodness! As I weaned off of prednisone (50mg), the oral irritations and erosions returned.
By this point, I was also seeing a rheumatologist, who suggested that I might have Behcet’s syndrome after ruling out several other options with lab tests. We were getting close. At the end of July 2014, when I was up to 80mg of prednisone with oral improvement (able to eat roasted chicken!) my ENT doctor attempted to wean me off of the prednisone with only oral rinses for support. Well, my mouth took revenge and my extremities took notice with blisters on my back, arms, legs, groin, and chest.
I returned to the walk-in clinic. The doctor took one look at my mouth and body blisters, referred to her book, and said, “This looks like pemphigus vulgaris. I’m sending you to a dermatologist for a skin biopsy.” On August 6, 2014, the result came back positive for pemphigus. The clinic dermatologist, in the meantime, treated my skin blisters with triamcinolone cream, oral tetracycline, and oral prednisone (40mg). Since she was not familiar with PV treatment, she referred me to a dermatologist at the University of South Florida Medical School in Tampa with a scheduled appointment one month away. Unfortunately, the new doctor had to cancel the appointment because of a move to California! The best I could be offered was an appointment two weeks after the original one and with a third year resident. But by that time I was becoming anxious, and my husband and I decided to do some work on our own. My husband found the IPPF.

I placed a call to the IPPF, and the Patient Services Coordinator, Noelle, sent me a list of Central Florida doctors. Within two days of emailing one of them (Sand Lake Dermatology Center in Orlando), I had an appointment that confirmed the diagnosis of PV and was told by Dr. Allison Arthur to stay on prednisone (40mg). I was further prescribed CellCept (1500mg) to begin immediately.

Now it is the end of July 2015. I am taking CellCept 3000mg and prednisone 10mg daily. The skin blisters on my extremeties are long gone. My oral cavity remains irritated with inner cheek erosions, small blisters under my tongue, a slightly swollen and tender tongue, and with sticky saliva covering everything. I am able to eat soft, solid foods, taking small bites and chewing slowly. Of course, eating from a menu at restaurants can be tricky. I can’t bear fresh fruit, tomatoes, raw onion, or garlic. I can’t manage coffee or most common condiments.

Dr. Arthur suggested Rituxan infusion therapy as my next option in treatment. With the collaboration of my Watson Clinic dermatologist, Dr. Sharon Fairbee, I saw a clinic oncologist late in June, and my Rituxan therapy has begun after I was approved for financial assistance via the drug maker. My second infusion in late July went well. I have noticed slight improvement, noticeably on my tongue. Chewing seems much easier. The sticky saliva seems reduced. I am maintaining an upbeat attitude to keep my immune system happy! Hopefully my road back to health will continue without any traffic stops, and remission is in my very near future!

Toni Addy is a retired RN and PV patient living in Lakeland, Florida, with her spouse of 44 years. She became an RN after having a “mid-life crisis” and switching careers. She was previously a school teacher. Living with PV and sharing the need for better understanding of PV diagnois and treatment is her priority.
Toni Addy, BS, MA, AS, living in Lakeland, Florida is a PV patient and retired RN. She wrote her story for herself and other PV patients and families.

My pain started four years ago, in April 2010. I distinctly remember the raw feeling in my mouth that appeared unexpectedly as I struggled to eat a meal with my family. Over the next few days, painful sores that were larger than usual mouth ulcers began to form in my mouth. I couldn’t remember ever having mouth sores, ulcers, or any mouth condition in my lifetime. The constant pain and the fact that I was finding it increasingly difficult to eat or drink made me concerned, so I booked an appointment with my general practitioner (GP).

Initially, my GP thought it could be thrush and prescribed basic antibiotics, mouth gels, and other remedies. They seemed to work for a while and eased the pain a little, but once I had completed the treatments, the sores reappeared, only more aggressively.

It was a toothache that led me to book an appointment with my dentist. She strongly suggested I see an oral consultant. At this point I was even more worried about my condition, as the sores were not going away and I was in constant pain. I began to research possible causes for my condition on the Internet, which I am not sure was a good thing to do as it made me imagine I had all sorts of possible diseases.

Near the end of June, at my first appointment with an oral consultant, I was diagnosed with possible geographic tongue. As the condition of the rest of my mouth became progressively worse, I decided to get a second opinion. The diagnosis from the second oral consultant was stomatitis vegetans, and I was prescribed metronidazole, Biotene® Gel and fluconazole. This treatment initially seemed to help, but after a while the oral lesions were widespread in my mouth, which led to my having a biopsy of my tongue.

Eventually, a biopsy confirmed I had pemphigus vulgaris (PV). Like many others, I had never heard of this condition. My oral consultant explained that PV was a rare autoimmune skin blistering disease for which there was no cure, but it was treatable. I was stunned and frustrated, but I also felt some relief that I finally knew what my disease was. The most disappointing news was that there was no cure, but I had faith in my oral consultant and the professor at Guys Hospital in London and believed that they would do everything they could to help me. I am also extremely lucky to have such a wonderful family and friends who have supported me during my suffering, and I cannot thank them enough. Unfortunately, I was unaware that worse was yet to come.

In a strange way, I seemed to be getting used to having this pain on a daily basis and it soon became the norm.

Between November 2010 and March 2011, I was prescribed a steroid mouthwash and continued to take metronidazole with some success. I also had regular reviews with my oral consultant. I continued to suffer on a regular basis with major flare-ups in my mouth and difficulty eating and sleeping. In a strange way, I seemed to be getting used to having this pain








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Friday, April 25, 2014

3:00 pm Registration Opens
4:00 pm Welcome, Opening Remarks and Weekend Overview (Sahana Vyas and Will Zrnchik)
4:15 pm – 6:00 pm SESSION I – INTRODUCTION TO P/P
4:15 pm Pemphigus: Disease Classification & Clinical Features (Animesh Sinha)
4:45 pm The IPPF Registry and PV: What the Data Tells Us (Amit Shah)
5:00 pm Pemphigoid (Razzaque Ahmed)
5:30 pm Q&A (Ahmed, Sinha, Shah)
6:00 pm – 8:00 pm Welcome Reception sponsored by KabaFusion

Saturday, April 26, 2014

8:00 am Morning Beverage Service
8:00 am Registration Opens
8:30 am Opening Remarks (Sahana Vyas and Will Zrnchik)
8:35 am IPPF Awareness Campaign (Kate Frantz)
8:45 am Being a Citizen of the IPPF (Badri Rengarajan)
9:00 am Treatment Options (Grant Anhalt)
9:30 am Personalized Treatment (Sergei Grando)
10:00 am Treatment Side Effects (Razzaque Ahmed)
10:30 pm Understanding IVIg (Mike Rigas)
10:50 am Break (coffee, tea, water, breads, etc)
11:00 am – 12:30 pm SESSION III – LIVING WITH P/P
11:00 am Building a Personal Support Network (Victoria Carlan)
11:20 am Awareness and You (Kate Frantz)
11:40 am Stress and Autoimmunity (Firdaus Dhabhar)
12:30 pm Afternoon Overview and Instructions (Sahana Vyas and Marc Yale)
12:30 pm Attendees on their own / Speaker Open Discussions
5:30 pm – 10:30 pm IPPF 20th Anniversary Gala Celebration
5:30 pm – 6:00 pm Cocktail Reception
6:00 pm – 7:00 pm Dinner
7:00 pm – 7:10 pm Congressman Danny Davis Keynote (Sahana Vyas)
7:10 pm – 7:15 pm Recognizing 20 Years (Grant Anhalt)
7:15 pm – 7:20 pm TBD
7:25 pm – 7:30 pm Founder’s Award Presentation (Zrnchik/Segall)
7:30 pm – 10:00 pm Casino Night and Live DJ
10:00 pm Chip Counts and Prize Selections
10:30 pm Evening Ends

Sunday, April 27, 2014

8:00 am Morning Beverage Service
8:00 am Welcome Back and Workshop How-To (Sahana Vyas and Marc Yale)
8:05 am Patient Panel Discussion (PHCs, invited patients)
8:35 am IPPF and You (Badri Rengarajan and Will Zrnchik)
9:00 am – 11:20 am SESSION IV – WORKSHOPS (snacks/beverages available)
Workshops running concurrently; attendees SELECT ONE WORKSHOP FOR EACH BLOCK Each workshop is 40 minutes with 10 minutes between. Formats may vary (10 minutes presentation, 30 minutes Q&A; 10 minutes presentation, 20 minutes practical application, 10 minutes Q&A; 20 minutes presentation, 20 minutes Q&A; Group Discussion)
9:00 am – 9:40 am Block I

  • Diet and Nutrition (Vicky Starr)
  • Reducing Stress through Meditation (Mei Ling Moore)
  • IVIg Insurance and Reimbursement Issues (KabaFusion)
  • Caregivers and Family (Scott Oling)
9:50 am – 10:30 am Block II

  • Diet and Nutrition (Vicky Starr)
  • Oral Care and Hygiene (Sandra Boody)
  • The Science of Pemphigus at the Cellular Level (Ani Sinha)
  • P/P Awareness Focus Group (Kate Frantz)
10:40 am – 11:20 am Block III

  • Pemphigus & Pemphigoid Below the Belt (Razzaque Ahmed)
  • Ocular Concerns and Care in P/P (Ali Djalilian)
  • Reducing Stress through Hypnotherapy (Janet Segall)
  • Insurance and Reimbursement Issues (Walgreens)
11:30 am – 12:45 pm SESSION V – Ask the Experts (Moderator: Sergei Grando)
11:30 am – 12:00 pm Q&A (presubmitted questions)
12:00 pm – 12:45 pm Q&A (open mic)
12:50 pm Closing Remarks


The IPPF is reviving support in the San Francisco Bay Area! This is a FREE event and patients, caregivers, and interested

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individuals are encouraged to attend.

IPPF MAB member Dr. M. Peter Marinkovich (Stanford University) and SF Support Group leader Prem Jain invite you to join them at Stanford Medical Outpatient Center.

WHEN: Saturday September 29, 2012 from 11am – 2 pm.
WHERE: Stanford University
The event is FREE. A light lunch is FREE. Parking is FREE.

Joining Dr. Marinkovich and Prem will be IPPF CEO Will Zrnchik and Senior Peer Health Coach Marc Yale. For more information or to register, click the Register button below.

The 175 genes that were found to be significantly differentially expressed between cases and controls were used as input for pathway analysis with the ingenuity pathway analysis software. The network that was given the most significant P-value and the highest-scored functional pathways is shown. The network was found to be related to ST18 (marked in green). © 2012 Society for Investigative Dermatology

The recent buzz in the pemphigus and pemphigoid community stems from the publication of “Population-Specific Association between a Polymorphic Variant in ST18, Encoding a Pro-Apoptotic Molecule, and Pemphigus Vulgaris” in the Journal of Investigative Dermatology (available online, March 2012).

Despite the fact that pemphigus most often affects adults, it seems a large extent may be genetically determined. Indeed, the disease sometimes runs in families. Also, the deleterious antibodies implicated as a major cause of the disease can be found in healthy relatives of patients. And finally, the disease prevalence is highly population-dependent. For example, it is up to 40 times more common in Jewish as compared with non-Jewish populations.

The delineation of the genetic basis of a disease can reveal unknown aspects of its pathogenesis, which in turn is likely to point to novel therapeutic targets. To tackle the genetic basis of pemphigus vulgaris, Dr. Ofer Sarig and Eli Sprecher (Department of Dermatology, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel) led a collaboration with Ibrahim Saleh (co-Principle Investigator), Detlef Zilliekens, Michael Hertl and Markus M. Nöthen (Germany); Dedee Murrell (Australia), Aviv Barzilai, Henri Trau, Reuven Bergman, Ariel Darvasi, Karl Skorecki, Dan Geiger and Saharon Rosset (Israel).

Over the past two years, they assessed on a global (“genomic”) level the possibility that specific genetic variants may predispose to pemphigus vulgaris. They identified genetic variations in a gene called ST18 associated with the increased incidence of pemphigus vulgaris in Jewish and Egyptian patients. The fact that patients of German origin did not demonstrate the same trend suggests that the ST18 variants shows an increased risk for the disease in a population-specific manner. Carriers of the genetic changes have a 6-fold elevated risk of developing the disease. These genetic variations are associated with an increase in the expression of ST18 in the skin. Since ST18 is known to promote programmed cell death, increased expression of this protein may render the skin tissue more susceptible to the deleterious effects of the pathogenic antibodies.

Prof. Eli Sprecher is Director of Dermatology at The Tel Aviv Sourasky Medical Center in Israel.

What started as a posting of the story on Facebook quickly spread to the P/P Email Discussion Group where the talk turned to quicker diagnosis, better treatments, and a cure. Dr. Sprecher said, “The greatest reward for a physician involved in basic research like me is the feedback we get from our patients. This goes much deeper than anything else.” The P/P Community continues to be high-spirited and focused on researching this discovery and hopes more information is available at the IPPF’s Fifteenth Annual Meeting in Boston, May 18-20. 2012.

This step along the path of better understanding disease susceptibility and pathogenesis sheds new light on the genetic association of pemphigus vulgaris. Future work is still needed to more towards better genetic tools that impact disease management and targeted therapies.

But today, we are one step closer than we were yesterday.