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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 – 10:30 am SESSION II – TREATMENT OPTIONS
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.

by Kirsten R Bellur

It is almost four years ago that, after many failed attempts, I was finally accurately diagnosed with Pemphigus. In the face of that solemn pronouncement, I was told there was good news: it was only Foliaceous, a more benign form, that was easily treatable with Prednisone. And under that treatment it would most likely go away. But this sanguine vision and mitigating explanation of the seriousness of the illness did not obviate the fact that I was unable to regain the integrity of my skin.

By Rebecca Berman, Janet Segall and Jean-Claude Bystryn, M.D. from The National Pemphigus Foundation and The Ronald O. Perelman Department of Dermatology, New York University School of Medicine, New York, NY. February 17, 1999

As many of you know, we recently conducted a survey of persons with pemphigus to find out 1) which treatments were most commonly used, 2) which appeared to be the most effective, and 3) which were most often associated with side effects. The survey was conducted by means of a questionnaire enclosed in the Fall 1998 issue of the National Pemphigus Foundation newsletter, the Quarterly. The questionnaire was also sent to all individuals who responded to a notice on the NPF website.A total of 110 responses were received. This number is impressive, taking into account the rarity of pemphigus. We thank all participants for their collaboration.