Category Archives: Issue 60 – Spring 2010

As you read this issue I’m sure that you will be as amazed as I am about all the ways that members of the community reach out to serve others. This is the Support Issue, our time to highlight, thank and congratulate people and projects that help individuals; support community groups; advocate with doctors; dentists and nurses; do research and write articles; work to get insurance or medicare coverage; serve on our Boards; present at meetings; write grants; throw teas, BBQ’s or events to raise money; or offer an open heart, warm shoulder, or understanding ear to others in need.

I was working with one of our Peer Health Coaches (see Susan’s story on page 7 for more info) the other day, who shared with me how she has been driven to contribute to change the experience of the next newly diagnosed patient and, in the process found what so many of you speak of — a powerful way to make a difference, to take your challenging experiences and use them to expand compassion and insist on better options for everyone. Your peers share this determination, and give of their time and talents in so many ways. Read over the great Awareness Building Campaign featuring Miki who has spread the word to over 1,700 Dermatology Physician Assistants around the US! Every talent can be used to help others.

We’ve been working on planning the Annual Meeting these last few months, (more at it’s like planning a family reunion, looking forward to seeing old friends and excited to embrace the newcomers with the warmth of this community. Many of you will be delighted to see

Janet, our Founder, Dr. Razzaque Ahmed from Boston, your Peer Health Coaches (PHC), members of our Board and Medical Board, your favorite doctors, our resource partners and Will, at another (or your first) Annual Meeting.

This year there will be topic-specific breakouts and a “track” for people interested in finding out more about becoming a PHC. Those interested can email Marc Yale (see Marc’s article on page 9) to indicate your interest in participating in the Peer Coach Track. We also have added, per your feedback, more Q&A sessions and more time to gather and connect. It is important for everyone in this community that you come, share your wisdom, show our power, and laugh, cry and connect with this amazing group. You’ll be glad you did, I certainly am!


Part of the training in most psychology doctoral programs involves going through your own personal therapy or analysis. There are two main reasons for this: 1) It is important for psychologists to truly understand themselves in every way, especially to recognize issues if they occur when doing therapy, and 2) to experience being on the “other” side of therapy and to experience personally that asking for help from a professional is not a sign of weakness.

Everyone does need support and a supportive network. This does not mean you are weak, but that you are human. People really do need people, as the song goes. This is true whether or not you have, or know, or care for a person with chronic illness. There are, however, differences in the amount and kinds of support people need — and the kinds of support people are able and willing to provide.

Back in the early part of the 20th century a psychologist (Sullivan) stated that children would be okay if they had just one good friend by age 11 or 12. More than one friend was fine, but only one was/is necessary. The kind of support system the patient already has is a very important factor. Do you already have the support of someone you can count on? Not everyone needs to see a professional counselor, social worker, therapist, psychologist or psychiatrist.

How does someone know when they need support or what kind of support they need? How does someone know how to ask for support or help or how to offer it when someone else needs support? There are no blanket answers here, because even with universal human needs, there are innumerable individual differences in people.

When I received my own diagnosis of Pemphigus I did what I would tell anyone to do:  I consulted with a professional, and over the years I have checked in every couple of years to make sure I have an objective perspective. Sometimes it feels like jumping through hoops (e.g., just trying to get to the right doctor or treatment) , and sometimes it feels like leaping through “flaming” hoops (e.g., trying to get insurance coverage, etc.). When running the Pittsburgh P/P support group, I realized that for many/ most patients it is most important to reach out when they had their worst symptoms.

How a person will react/ respond to the illness depends on many factors. If you find yourself isolating yourself, tearful much of the time,  feeling  helpless or hopeless, not enjoying things previously enjoyed or having sleep difficulties (difficulty falling asleep, difficulty staying asleep, or early morning awakening) those are some indicators that at the very least a professional consult may be critical for the best quality life under what may be extremely difficult conditions.

My belief is that everyone is entitled to feel the best they can under even extraordinary conditions. Sometimes this involves prescriptions of psychotropic medications, psychotherapy, or some combination of both. Some people have a need to discuss very personal and difficult subjects on a regular basis and later need only “booster” checkup appointments. (I am available for emails and phone calls) There is no right answer.

Also, support can come from asking someone to help with basic activities like grocery shopping, cooking or laundry. Some people are better at support through doing, rather than being (there for you).

The IPPF and other groups provide a special kind of connection (a “common bond”) for people (and caregivers) with these illnesses, and innumerable personal  relationships and  precious friendships have been formed over the years. In many cities and other countries local groups have existed for more than a decade!  Kudos to those who are running groups and to those who are in remission and continue to be active in the P/P community.

At the upcoming Annual Meeting in Philadelphia, PA at the end of April, 2010, I look forward to meeting and talking to as many of you as I can. The meeting includes support in the form of information, access to the world’s leading doctors in P/P, and the connection with others. There will be opportunities for breakout sessions tailored to your interests, and do share any suggestions about other topics which may be helpful in the future.

Think about ways you may be able to enlarge your own support systems or reach out to others who may be having difficulties. In the meantime, remember Frank Sinatra’s mantra:  DO BE DO BE DO BE DO!

Dr. Terry Wolinsky-McDonald is a licensed clinical psychologist in the Pittsburgh, PA area. She is a member of the IPPF Board of Directors and frequent contributor to the Quarterly. Her articles focus on the psychological aspects of living with P/P in patients, caregivers, and family members.


If anyone would have told me four years ago that I would be writing this narrative, I would not have believed them. My name is Susan Gonzales and I was diagnosed with pemphigus vulgaris (PV) in February of 2006. I was so sick by the time of this my diagnosis and my feeling of despair and hopelessness was all consuming.  This PV diagnosis, as frightening as it was, was welcome as I had bounced from doctor to doctor and had test after test, for eight months with no answers as to what was happening to me.

Finally, a new group of doctors put a name to this disease that was attacking my body. A disease whose name was as frightening as the lesions that covered my throat, the inside of my mouth and had now began on my lips. As I look back, it was much easier to deal with this disease when the lesions were confined to my throat and mouth. Being in outside sales, on a day when I could muster enough strength to meet with a client, they may have suspected  that I did not feel well, but never knew why. But, a new level of anxiety overcame me when the lesions began appeared on my lips. The looks and stares from people were hurtful. I just wanted to hide.

After being diagnosed in August 2007 with Bullous Pemphigoid (BP), I wondered what I could do to help others who were suffering with this disease. I felt that there had to be something that I could do to help. I became as educated as I could about the disease, I became active on the “Community” website ( and I learned how to manage my disease. Then, the IPPF gave me an opportunity to help out as a “Certified Peer Health Coach” (PHC).

At this year’s Annual Meeting in Philadelphia, you will have many opportunities to make a difference in the lives of others who suffer from our disease by learning about, and considering becoming an IPPF Peer Health Coach.

This program matches Coaches with participants who will benefit from support. I will be conducting and hosting three, one-hour PHC sessions to help you learn about, and consider participating in, this crucial program.

As our community continues to grow, so does both the IPPF’s Peer Support and Health Management Programs. The IPPF’s Health Management Program was developed to help new and existing patients diagnosed with Pemphigus/Pemphigoid manage some of the challenges of the disease.  As a bonus, the data collected helps doctors and scientists to get a better understanding of the disease and treatment outcomes through research questions.

The Health Management Program improves our understanding of the disorder, improves treatment, improves communication with healthcare providers, and give people an opportunity to find an educated, experienced and non-judgmental outlet to share experiences, and to learn how others are managing the disease.

If you would like to learn more about becoming a

Certified Peer Health Coach, please contact me at

916-922-1298 extension 1006, or you can email me at to get started.

Marc Yale is a Certified Peer Health Coach for the IPPF working to better the lives of patients around the world.

Most people first come to the Annual Meeting when they are in the worst throes or the early stages of these diseases, in pain, angry, alone and uncertain.  Most leave having met many, many folks who are in “remission,” that magical word, (see inspiring stories of remission at, who are filled with laughter, joy, passion, gratitude and yes, a “moon-face” or two.  How can two days in a hotel ballroom alter the lives of so many so fast, over and over again each year?

For people to move through this transition from newly diagnosed to capable advocates for their own health and well-being they need quality information, a sense of hope, and the support of others who understand where they are, and where they can get to.

The quality information comes from the leading doctors in P/P both in the lab and in the office, or what we call “bench to bedside”.  At the Annual Meeting you will hear presentations from experts in oral medicine, new research findings and medicine advances. Not to mention the super-practical advice from you peers on how to soothe the pain and the worry.

The most gratifying results of the meeting are the sense of hope that blooms in the new folks when they see rooms full of laughing, hugging, perfectly “normal” folks.  Most people do get through the major suffering that comes early on, many get off drugs entirely and all demand and receive better care after being armed with information, advice and even Peer Health Coaches (read Marc’s article on page 7) to help them advocate for their own best care.

Finally, getting together with others gives voice to the larger needs of this community.  More awareness in the medical community to avoid long diagnostic delays (see Miki’s story on our front cover); sharing data in the patient Registry (see story on page 13) to support drug research and best practices in treatment plans; talking with Board members about how you can serve others or needs you see that you can help address; and most often shared: the sense of purpose that comes along with taking such a challenge as P/P and turning it into a way to provide meaning and support to others who come after.

Who wouldn’t want to be a better informed, healthier, stronger patient that can make a difference for others?

TOP LEFT: Ever the showman, IPPF BOD President Dr. Dave Sirois dons a new look at the 2009 meeting.

TOP RIGHT: Attendees from the 2009 AM in Los Angeles listen in.

BELOW: Drs. Grant Anhalt and Ani Sinha at the 2008 Celebration Dinner.

On November 6, 2009, the UK’s PEM Friends met for their regular Autumn Lunch which is always held in London. As usual, it was in Peter Jones, Sloane Square. The management is always extremely helpful and we have all the space we need for a gathering of between 12 and 20 people, and are never hurried or bothered in any way.

This year’s gathering was as enjoyable as ever, although at the last minute five people sent text messages to say they couldn’t make it. We were nevertheless a party of fourteen and as ever, new friendships were forged and old friendships rekindled.

It’s always so helpful and reassuring to be with people who understand what it’s like to have active pemphigus or pemphigoid. Those attending a lunch for a second or third time exhibit such an improvement in their bearing, demeanour and

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self-confidence. I believe this comes from having developed a greater understanding and knowledge of their condition and more importantly, having met up with others in this unique club!

Dr. Jane Setterfield, who has both private and NHS patients in London, was our guest. Unfortunately she was held up at the hospital and couldn’t join us until fairly late on, but those still present had a most illuminating chat with her. As with Dr. Karen Harman, Dr. Setterfield is so generous with her knowledge and answered all our queries in great depth.

From PEM Friends funds, the guest dermatologists are given a £50 Marks & Spencer Gift Voucher as a token of our appreciation.

by Carolyn Blain
PEM Friends (UK)

“From everything we know about pemphigus vulgaris, you’re in remission.”

I just stared at the doctor in disbelief. I think I actually said, “You’re kidding me, right?” Probably not the best response. But he smiled, as did the other two doctors in the room, and said, “No, I’m not kidding.”

It took me till I left the appointment, got in my car and was stuck bumper-to-bumper in Boston traffic to realize that I had done it. I had licked this insidious disease – well, as licked as an autoimmune disease can get. Anyone who has battled one knows that there is always the chance that it will rear its ugly head again – “not curable, just treatable,” is the refrain we all hear way too often.

I was in Tennessee this week, seeing the colors of the trees burn across the ridges, and feeling the fall induced opportunity to feel gratitude. As you get this, we’ll all be deep into the holidays and winter, giving us a chance to reflect on the gifts of the year.

Some things we’ve had a chance to be grateful for this past year include the vision and inspiration that Janet dedicated to the cause of helping those with a “common bond”, the courageous/relentless visioning of the future by Dave Sirois, President of your Board, whom I work with weekly on our strategic plan to

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make headway in awareness, research, treatment and advocacy. And, the rest of the Board each gives, above and beyond, of their own special talents.

Will, of course. He gives his all, all the time, (my favorite is, “Sure, I can do that!”) with a wealth of expertise and skill and energy to learn new things that is beyond compare. Thanks, Will, for it ALL!

And, of course, each of us is so grateful for the generosity of others who share your concerns and are moved to making a difference. The Double the Difference Donation-Match Campaign inspired over 200 NEW donors in 2009 and over 41 donors gave more this year than they did last year — and there’s still one month to go! Please consider the impact a donation this year could make when you receive your holiday fund-drive mailer — and give your feedback on what you care about, it matters to all of us!

With these funds we have build an online data registry to make data collection faster, easier and more accurate (see information about our 1010 in 2010 drive on page 5 of the printed Quarterly); we are partnering with National Disease Research Interchange (NDRI) and the NIH to begin blood and tissue sample collection to be used for direct medical research; and we have trained and added two new Peer Health Coaches, Marc (BP, in the West) and Yvette (PV, in the East) to get more patient questions answered faster and more conveniently; finally, we will be hosting a Scientific/Medical Consensus Conference of the luminary P/P doctors worldwide and an audience of over 150 doctors, in the Fall of 2010 in conjunction with the NIH. There, the goal is an agreed-upon, evidence-based protocol that can be shared with doctors with less expertise, to improve treatment outcomes and a discussion of promising discoveries at the cellular/immunological level. These conference should result in at least two publications advancing medical knowledge of P/P worldwide. And the IPPF 2010 Annual Meeting, of course!

Which just leaves the over 4,000 of you we communicate with monthly by email, the over 600 who choose to subscribe to our paper newsletter, the 4,600 who read our newest news and information in real time on our News & Information site, Facebook, and Twitter, and the more than 350 new patients who personally contacted us this year!

Each of you gives — in the thank-yous you share with us, in the discussions you have with your neighbors, in the awareness building projects you develop in your communities, in the outreach you do to others that are hurting, or confused, or afraid, in the courage with which you move forward. Your time, and a hand along this journey, are gifts beyond measure.