Category Archives: Issue 66 – Fall 2011

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 jack@pemphigus.org.
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@ pemphigus.org, 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!
Greetings!
Usually after the Annual Meeting as the days blend into Summer, we have a period of quiet time at the office to clean off our desks, unpack boxes and follow-up on all the new opportunities generated from the meeting. This year, there were so many new opportunities there was little time to “dig our toes in the sand”, although Will did manage to take a break to get married and I vacationed away my “day to get a year older.”
Here’s what we’re juggling:
Already it’s time to prepare for the 2012 Annual Meeting. Save the date for BOSTON May 18-20, 2012, and see more info at www.pemphigus.org/annualmeeting. Terry Wolinsky-McDonald, Sonia Tramel, Greg Wright from the BOD, and Will Zrnchik are working closely with Dr. Razzaque Ahmed and the Blistering Diseases Clinic and other area leaders to host one of the largest and most informative meetings ever. If you have skills that could add to the organization or fundraising for this meeting, please contact me at molly@pemphigus.org.
Your Board of Directors approved a budget for a research study of delays to diagnosis. It’s a short online survey to document where people go when they have symptoms and what doctors are doing and saying — the ones that go awry and the ones that help. This will allow us to identify key areas where education and outreach can move the lever to better diagnosis and allow us to apply for grants to fund this education. If you were diagnosed within the last 18 months please answer this survey (see page 3) — there are likely 300 new P/P patients a year in the US and we need over 100 to be secure in valid survey results.
I have been working to develop inroads in the Pharma industry, attending several drug development conferences and having meetings with many pharma companies to generate research opportunities based on the data in our Registry and opportunities for basic science through blood and tissue donations. In addition I have been speaking with Medical Advisory Board members and small bio-tech firms to generate interest in research projects on drug compounds that my be effective with disease mechanisms that cause P/P.
I’ll be off again shortly to an Orphan Drug Industry Conference and then to Washington DC to advocate with the NIH (www.nih.gov) and NIAMS (www.niams.nih.gov) for increased funding in the orphan and autoimmune areas. In the meantime, contact Will at the office or Marc Yale and his team of Peer Health Coaches if we can assist with anything.
Happy Fall,
Have you ever had a question about pemphigus or pemphigoid, a certain medication, or a treatment protocol and you just can’t get a straight answer from your physician? How about wanting to know more than you already do about your disease and how to live with it? Well, the IPPF has a way to help: our FREE Town Hall Conference Call series.
The IPPF has now conducted three of these calls and feedback has been tremendous! The sessions are free, feature a leading P/P physician from the IPPF, and are done in a Q&A format moderated by IPPF Senior Peer Health Coach Marc Yale.
The calls last one hour and callers are able to ask the doctor a primary question and a follow-up question before allowing the next caller a chance. Callers may enter the queue as often as time allows, but should keep in mind the goal is to allow many people to ask questions. Often, hearing other questions will answer some of your own.
Additionally, questions can be sent to townhall@pemphigus.org during and after the session. If you miss a Town Hall or want to re-hear the session, audio files are available in MP3 and .zip format at
www.pemphigus.org/townhall about 48 hours after the call has ended.
If you have questions about the Town Hall Conference Calls, want to recommend a speaker or an idea, email townhall@pemphigus.org or call (916) 922-1298 x1003.