Monthly Archives: December 2008

On Friday the 10 October 2008, we met for an informal and very leisurely lunch. It was in our usual London venue, i.e. the far right hand corner of the self-service restaurant on the 6th floor of Peter Jones, Sloane Square, London.

We were joined for lunch by our guest dermatologist Dr. Jane Setterfield, BDS, MBBS, DCH, DRCOG, FRCP, who has both private and NHS patients in London.

Dr. Setterfield was most generous with her time and allowed different ones to come and sit by her to discuss personal issues.

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Only after chatting with Dr Setterfield did I realise just how precious her time was then, as she was nearing the end of preparation of a massive thesis.

As with our previous guest, John Dart, and the guest at our next lunch, Dr. Harman, we offer them lunch and present a 50 Marks & Spencer gift token, which is just a small indication of our immense gratitude.

Eighteen PEM Friends attended this lunch, although one absolutely refused to go on the photograph! Dr. Setterfield is standing behind Carolyn (front row, center) on her left.

I look forward to meeting lots of Friends and new people are always so welcome.

PEM Friends

About once a year the Dutch Network for P&P organises a meeting for patients and their partners or caretakers. The last one was held 1 November 2008 at Poeldijk, the Netherlands. Eighteen people from all over the country were present. It was an informal happening where lots of experiences were exchanged in a very pleasant atmosphere.

The IPPF is delighted to share friends and access to support ALL over the world. Hermien and the Dutch group provide web services, chat support and general information and caring to all who participate. The IPPF is lucky to call them partners and friends.

Dutch Netwerk

The LA Support Group got together on October 11, 2008, at the Westside Pavilion in Los Angeles, California. The Group was joined by UCLA’s Dr. Jennifer Haley and IPPF Founder and Director of Patients Services & Education, Janet Segall.

The 15 attendees enjoyed casual conversation and listened as Dr. Haley answered their questions regarding the medical aspects of P/P. Janet spoke about the upcoming Annual Meeting to be held in Los Angeles, Calif., USA, April 24-26, 2009. Janet encouraged the group to spread the word in their communities about the meeting and invite family and friends to the meeting and/or the celebration dinner. A request for the Group to search out in-kind donations from local and chain businesses was made.

Many IPPF members and friends in the Los Angeles area, and others who have a talent for asking, have solicited loads of great gifts and auction items from local treats like a stay on the Queen Mary, to internet gift certificates, flowers, fruit, delivered treats and care products. Everyone’s help is needed to make this a special event for all. If you are interested in making a donation, contact Molly, IPPF CEO, at molly@pemphigus.org or (916) 922-1298.

The LA Support Group would like to thank Dr. Haley and Janet Segall for their participation.

I am delighted to inform you that there is now an organization in Canada to help patients and caregivers better cope with these diseases. The Canadian Pemphigus and Pemphigoid Foundation based in Ottawa, Ontario was incorporated as a not-for-profit organization in August 2008 after over a year of work and effort by a small group of committed patients and caregivers.

“I know how difficult it was for me in the beginning,” says Dan Goodwill, Chair of the new Foundation and a IPPF Board Member and Local Support Group leader. “Having some place to go where you can talk to others who are going through what you are is extremely helpful in the healing process. We are committed to keeping patients and their families and friends central to our work.”

The idea began in July 2007 at the IPPF’s annual conference held in Toronto, Ontario. {quotes}Our vision is to see that the lives of all Canadians suffering from these diseases are improved and that we contribute in a meaningful way to the worldwide network that the IPPF is creating.{/quotes}

Already the Foundation has active support groups (“Circle of Friends”) in Toronto and Ottawa with another starting in Montreal in early 2009. Next stops are Calgary, Edmonton and the Atlantic region.

If you are interested in becoming a leader in your area, we encourage you to contact us. We can help you find speakers, promote your event, and provide educational materials. You will also become part of a network of support group leaders across the country.

The website (www. pemphigus.ca) will be providing relevant information to Canadians associated with these diseases. Resources permitting, educational materials will be made available and events will be held. Efforts will be made to reach out to the broader healthcare community so that patients are diagnosed earlier and effective treatment strategies readily available.

We are also thankful for the wonderful support the IPPF has given us. Soon there will be an online forum for Canadians on the IPPF website and articles with updates on our activities in this publication. IPPF leadership paves the way for all of us to benefit as well as help contribute to finding a cure.

On a personal note, I cannot tell you how happy I am that Canadians have somewhere local to go for help and assistance. My first years with this disease were extremely lonely and frustrating. Now, we have a network of Canadians who are helping others “get through it” and I feel a great deal of hope that the future will be better for all of us.

Handfull of PillsA question that has been on the mind of many pemphigus/pemphigoid patients — and the subject of many discussions in the medical community — is regarding whether or not ACE inhibitors should be recommended to people with P/P disease if they have high blood pressure. There is some debate whether they may trigger disease. ACE inhibitors are in a class of blood pressure medicines that help relax blood vessels. ACE inhibitors prevent an enzyme in your body from producing angiotensin II. Angiotensin II narrows blood vessel which forces the heart to work harder. By relaxing the blood vessels, blood flows more easily through the body.

We asked some experts for their opinion on this. It seems that in a number of patients, pemphigus developed after treatment with ACE inhibitors including beanzipril, enalopril, lisinopril, and quinapril. But the data is confounding since there has not been consistent resolution of disease with discontinuation of the ACE Inhibitors. {quotes}Since use of ACE inhibitors is common, it is not possible to distinguish whether the statistical association is causal or coincidental.{/quotes} Some doctors report not recommending this general class of drugs, but the focus seems, so far, to be mainly on captopril — there have been very few reported cases with other ACE inhibitors.

A recent study by Dr. Sarah Brenner, et.al, of the Sourasky Medical Center’s Department of Dermatology in Tel Aviv, Israel, revealed a case of pemphigus triggered by glibenclamide (a drug used for Type II diabetes) and cilazapril (an ACE inhibitor) is described.

The suspicion of drug induction was confirmed in a laboratory study in which a pemphigus-like effect was induced by glibenclamide in cultured human skin explants. Withdrawal of the drugs resulted in subsidence of the lesions and no appearance of new lesions. PMID: 16146616 [PubMed indexed for MEDLINE]

In PubMed (NIH online research abstracts) in England lisinopril was reported as a possible PF trigger, and a report from the University of Genoa concluded that fosinopril was also a possible pemphigus inducer.

Our goal here is to provide research information on drugs that might either trigger or exACErbate your disease. We do not want to encourage people to stop using their blood pressure medications if they are on ACE inhibitors and doing well. Many people do very well on these drugs. We would, however, recommend that you have a serious conversation with your treating physician regarding using the drug(s) for your high blood pressure if you have not previously used them. There are many different types of blood pressure medicines available.

If you are being treated for high blood pressure, they might not be aware of the possible connections.

Be prepared. Be informed.

Joint Meeting of the EADV Task Force on Autoimmune Bullous Diseases and the International Pemphigus & Pemphigoid Foundation

Handshake

During the last EADV congress held in Paris (September 17th to September 20th, 2008) the EADV task force for autoimmune blistering diseases presided by IPPF Medical Advisory Board Member Prof. Marcel F. Jonkman (Groningen, NL) and Prof. Luca Borradori (Berne, CH) organized the first satellite meeting of experts, practising clinicians and young dermatologists-in-training interested in this wide and challenging area.

The International Pemphigus & Pemphigoid Foundation, the pre-eminent global organization dedicated to improving the quality of life of all people diagnosed with, or affected by, pemphigus or pemphigoid, joined the EADV task force, with the help of IPPF MAB Chairman Prof. Jean-Claude Bystryn (New York, USA). The final goal was to address and review clinical and management issues and also practical problems in the daily life of affected patients.

In the first part of the meeting, Prof. Borradori discussed how to make the diagnosis of pemphigus and pemphigoid (and the common pitfalls) with a review of the immunopathological criteria required for diagnosis. In this context, he emphasized the difficulty of classifying some elderly patients with chronic pruritic skin eruptions because of the lack of well accepted criteria for bullous pemphigoid, a problem that needs to be urgently addressed. [Editor: See related story, page 1]

Prof. J.C Roujeau (Paris, FR) subsequently presented data about epidemiology and incidence of these diseases with an analysis of the conflicting results existing about the morbidity and mortality rates of bullous pemphigoid between European and USA centers. IPPF MAB Member Prof. Dedee Murrell (Sydney, Australia) discussed how essential it is to use common terms and end points so that experts in the field can accurately measure and assess disease extent, activity, severity, and therapeutic response, and thus facilitate and advance clinical trials. The IPPF recently funded and completed such a consensus paper on such definitions in pemphigus but for pemphigoid there is still a lot to do.

The second part of the meeting was focused on the general care of autoimmune bullous diseases in the USA (Prof. Bystryn) and in Europe (Prof. Jonkman). There are major differences in the management of affected patients that are determined not only by the profoundly different health care systems, but also by the lack of good studies and evidence-based guidelines, particularly in pemphigus.

{quotes align=right}In a third round of presentations, IPPF MAB Members Prof. Michael Hertl (Marburg, GE) and Prof. Pascal Joly (Rouen, FR) described their encouraging experiences with the use of rituximab, an anti-CD20 monoclonal antibody, in the treatment of severe pemphigus patients.{/quotes} The question arose whether such biological treatment should be used in patients as first-line therapy with the aim of inducing a definite remission in a significant percentage of patients without the side effects from prolonged therapy with systemic corticosteroids and classic immunosuppressive agents. Controlled studies are needed to justify this choice.

Prof. Zillikens (L.beck, D) reviewed the therapeutic ladder followed to manage patients affected by bullous pemphigoid in Germany, emphasizing the difficulty in certain patients where the use of intravenous immunoglobulin, rituximab and or immunoadsorption are required to control the disease. Dr. D. Mimouni (Israel) reviewed the properties of an immunosuppressive agent, mycophenolate mofetil, which has gained a place in the management of blistering diseases in recent years. Although this drug has certain advantages (more selective effect on lymphocytes and better side effect profile) it is unclear if this molecule is really superior to azathioprine, a much cheaper and well established immunosuppressant.

The final and very important part of the meeting was dedicated to the patients perspectives of these diseases. The IPPF’s European Spokesman Mr. Peter Foldes (France) shared his medical experience with pemphigus (he had been diagnosed with this disease many years ago). He described his impressions and the insecurity he experienced concerning therapy side effects, disease evolution and prognosis. He emphasized the need to share knowledge and experience about the disease with other affected patients and the importance of having patients organizations such as the IPPF available that can support and properly inform people living with pemphigus and other autoimmune blistering disorders.

In the whole, the satellite symposium was a definite success. The number of participants (more than 120) far exceeded expectations. Every presentation was followed by an animated discussion  attesting to the friendly and stimulating atmosphere in the room  involving not only experts, but younger colleagues and dermatologists-in-training not yet familiar with this group of diseases. The take-home message for the organizers was clear: immediately start to think about the next task force meeting in the area of autoimmune bullous diseases with an attractive, practical and relevant program!

 

I was skeptical about the end-results of the BOD retreat, but I played in the sandbox of that weekend and here is what I learned:

Board work is that work. It is hard and demanding and I owe a debt of gratitude to my colleagues on the Board who challenged themselves to participate when necessary or hold back on commenting when it wasnt constructive.

Retreats are exhausting physically and mentally. I came home a bit frayed, but ironically energized because the biggest lesson I learned is that my colleagues on the BOD have a number of talents and interests and through our discussions we discovered new ways of putting each of our talents to work.

Retreat weekends are just a beginning, a new start and a fresh slate. They are an opportunity for us to recommit ourselves to the tasks and challenges ahead of us.

 

When Dr. David Sirois, the IPPF’s BOD President, first approached me about joining the Board of Directors, I remember he had a needle in his hand and was about to shoot into a lesion in the back of my throat! It wasn’t a time for me to question him. But, I was dubious unsure about what my role would be and how I might be able to contribute to the IPPF’s mission.

I have been inspired to write this by two things which happened to me within the same week, and the conviction that the reason for raising awareness is to reduce the time

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taken to get diagnosed. The measure of the effectiveness of our efforts in this area should be a marked decrease in that time.

I got an e-mail message from an old school friend who lives in Long Beach CA, while we lived in Boston, MA. This message contained the news that he had developed a rare autoimmune disease called pemphigoid. He did not remember that when I visited him in 2001, it was straight from my first IPF (as it was then known) conference full of information on PV. On a subsequent visit, I introduced him to Sonia Tramel, with whom he and his wife became friends. I tell this because it underlines a conclusion which I came to some time back: the general public (including friends and family) does not understand what we are going through and therefore forgets very quickly what information we pass on to them. How many of the readers have had friends frequently ask “What is that disease you suffer from

My second experience was acting as a guinea pig for my dermatologist who was teaching a class of Harvard medical students. I was examined by six small groups of students, totaling sixteen in all. Of these sixteen, three identified my lesions as, “erosions probably caused by pemphigus”. All of them saw the symptoms and were told what caused them. Doing this or by speaking to a class, which I have also done, you help those students recognize the symptoms on any patient they see in their career. Knowing that, each contact affects thousands of people.

When I was diagnosed with PV eight years ago, I learned how long it took for other people to be diagnosed. Since

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then I have been thinking of ways to get to people as soon as the symptoms develop, both to reduce the damage done by misdiagnosis and to get them in touch with the help available at the IPPF. My first interaction was with Carol Fischman to start the Boston Area Support Group. We tried various means to get publicity through a press release and an appeal to synagogues in the area with no noticeable result.

Over time, I became convinced that the impact of a TV exposure or newspaper article is immediate and short lived, but can help a few people who may be in the limbo caused by misdiagnosis or ignorance on the part of some doctors. A case in point resulted from a casual remark from a teenager on a TV show that her mother suffered from pemphigus which enabled me to track down a woman in a small town in Ontario, Canada, who thought that she was suffering alone and in fear of what her future held. I was able to connect her to our Community and reassure her that there is light at the end of the tunnel. On the whole, I think that the main benefit of random publicity is to make us feel less isolated.

After much thought, I have come to the conclusion that, while taking advantage of any opportunistic exposure to the media it can find, the Community should concentrate its publicity efforts on the entry points into the health system. There are various ways to achieve this.

Find out more by contacting the IPPF at info@pemphigus.org or 916-922-1298.

Is it better to have more things for ourselves or to do more for other people Is it better to measure our lives by our money and possessions, or by the sum total and quality of our experiences This is about what we do versus what we have. It is about possibilities. This isn’t about educations, professions or work titles, but how we choose to live and/or use our time, our money, our expertise.