Category Archives: Issue 75 – Winter 2013

Just as life is a journey, so is living with chronic illnesses like pemphigus or pemphigoid. In the last newsletter, I emphasized transitions along my personal journey. Chronic illness is an adventure no one signs up for, but once the diseases are triggered, life is never again exactly the same.

For those newly diagnosed, or their family, friends or caregivers, it can all seem unreal at first. There is a vague beginning to the new normal, as it takes time to get educated and to process the diagnosis and information. Even after there is an acceptance of the situation, it is overwhelming.

Everyday life becomes uncharted territory. One thing is for sure: now challenges seem to pop up a lot more. How the challenges are met will make the difference between function and dysfunction.

The pemphigus and pemphigoid (P/P) community is not a static one. Everyone goes through different stages in different ways, but with more similarities than differences. This is why the community continues to grow. People who have had very similar situations – and have made it through to the other side – are there to help you. Eventually, once your own life and illness have stabilized, you will have the opportunity to be there for others.

Some people will get more ill than others, and some people will respond more quickly to treatment. For everyone this is an adjustment — and again the degree of difficulty differs between people. Having an IPPF community, with a discussion group, a social media presence, award-winning newsletter and website, peer health coaches and volunteers (and more!), has helped many people along this journey in so many positive ways. Maybe YOU have been helped by one or more of our resources?

The IPPF works hard to ensure that no one has to go through this alone; this is not just helpful, but a bond, and one that strengthens everyone involved. It is a lifelong bond – one that keeps gaining strength. No one has to navigate this road alone any more.

This is the time of the year to give; but in our community, there is a need 365 days a year – not just one “giving” season. If you are not currently participating in some way – ANY way – there are many who would love to see you get involved.

ou do not have to dive into the deep end.

Start small, get your feet wet and move forward at a pace that is comfortable for you. Ask for help, guidance and advice along the way.

Consider sharing part of your journey with others in the P/P community. Maybe you…

  • know of an informative article we can use in the Quarterly?
  • would like to contribute a personal story that inspires others?
  • are available for an interview for an article?
  • can reach out to a newly diagnosed patient to lend an ear and encouragement?
  • have advice for the newly diagnosed we can share on a broader scale?

Because of the support in our growing community, health coaches, webinars and annual patient meetings, you will meet people who can help you learn new positive coping strategies. These new tools will allow you to continue your own movement, becoming more and more resilient along the way. You will internalize the newer and more positive coping mechanisms, and hopefully leave behind older, strategies that are no longer working.

The point is that you WILL find yourself feeling and presenting yourself differently in this world. When you calmly and rationally respond to someone in a new way (rather than reacting), your response may even change how the other person responds to you – and others – in the future. You will gain momentum and move forward in your personal journey.

As I write this column, it is a typical colorful Pittsburgh Fall. Some trees are still green, some have lost their leaves and are bare, and others are continuing to change colors and are absolutely glorious.

Practicing mindfulness and being “in the moment” allows one to just watch and enjoy nature with a combination of awe and appreciation. I’m not a personal fan of cold weather and bare trees, I know we will have winter wonderlands soon, with freshly fallen glistening snow – on the ground and on the trees. Everyone’s personal journey moves forward and changes just as the seasons change and cycle.

During your life journeys there are choices to make and different roads which can be taken. You can take the road most often taken or take the one not usually taken — neither is correct or incorrect. Just remember that there are always choices. Also try to remember that road that seems most “safe” may not be and may not help move you forward. Everyone makes mistakes, because humans are not perfect. Mistakes help people learn. Moving out of your comfort zone is not easy; it is a choice, and if you choose to stay on the same seemingly “safe” road, that is also a choice. Please let this last point sink in. DOING NOTHING IS A CHOICE.

Yes, life is a journey, but as you travel through, remember this quote: “What lies behind us and what lies before us are tiny matters compared to what lies within us” (Ralph Waldo Emerson). If you are reading this article and have gotten this far, look within yourself for that extra strength that may seem to be eluding you; it doesn’t always come from others. Maybe you just need to look a bit harder within. And, do not be afraid to ask for help.

Happy holidays. Try to start a new tradition this year. Tis the season to give – not just money, but of yourself. It will make your own personal journey more interesting and also sweeter, and by reaching out to others you will be making a far more important and satisfying contribution.

People often have a difficult time understanding what hypnosis and hypnotherapy are and what their purpose might be. If you’ve ever been to a fair and a hypnotist asks someone to “cluck like a chicken,” and they do, the individual clucking knows exactly what he/she is doing. They may not care that they look silly because they are so relaxed from the hypnosis.

If you notice, there is usually always someone who won’t perform – these actions indicate that a person cannot do anything against their nature. In a less public setting, the practice of hypnotherapy is a valuable and positive method of helping people cope with many different and difficult issues.

Hypnosis is the process a hypnotherapist uses to help a patient find answers to issues that they are having trouble controlling. But what is hypnosis?

Most agree that it is a naturally altered state of consciousness. As defined by Gil Boyne, one of the leaders in hypnotherapy, it is “an extraordinary quality of mental, physical and emotional relaxation.” Many studies have shown that a person in hypnosis may show psychological and physiological changes that can be beneficial.

We all experience a form of hypnosis when we find ourselves “lost in the moment.” If you’re driving down the road listening to the radio and you notice that you’ve gone three exits without even realizing it – that is a form of hypnosis. Or, if you’re on your computer and in such a deep state of concentration that you don’t even hear the noises around you – that, too, is a form of hypnosis. What a hypnotherapist does is take you into that natural state of intense concentration and relaxation.

What is Stress? Stress is something we all deal with on a daily basis. Stress can be a good for alerting us to dangers. A rush of adrenaline can give you amazing strength and can help get you through physical and emotional challenges. If you diagnosed with a life-threatening disease like pemphigus or pemphigoid, stress levels may increase substantially, and for a sustained period of time. The issues that confront us can be overwhelming. Not only are we dealing with the illness itself, but the issues that come with it.

How can I live successfully with the drugs which can in themselves increase my stress levels? How is this affecting my family? Will I have the financial resources needed?.

All these issues elevate our stress levels substantially. But what does that mean physically? Stress over a lengthy period can raise blood pressure, cause irritability, cause our thoughts to race, and many other problems. Many of us turn to drug therapy – both prescription or non-prescription to reduce the symptoms, while some of us look for alternative methods to augment drug therapy — these alternative methods include acupuncture, yoga, exercise, meditation and hypnosis.

What does hypnosis do that the other alternative stress reducing methods don’t? If you find the right hypnotherapist, someone you trust, you use your mind, your imagination, and your trust that the person you are working with can help you alter any negative thoughts or habits that plague you. The techniques the hypnotherapist uses are proactive approaches, meaning that you follow the suggestions of the therapist and use your subconscious to perceive your issues in a different way.

There are definitely good and bad hypnotherapists, and there are places to go to find one — the American Society of Clinical Hypnosis ( is an example of one. But often as with a traditional therapist, you use your instincts in your initial interview to know whether that person is right for you.

I became interested in hypnosis many years ago. Since pemphigus and pemphigoid are autoimmune diseases (diseases of the self), I thought if I could learn all that I could about pemphigus and how the disease worked, maybe I could “talk myself out of it.” Unfortunately, my situation precluded me from furthering my quest. However, I learned to meditate, which helped with the side effects of prednisone. A 30mg dose every day for 3 years worked well and put me in remission..

At this point, I was able to put the theory that I could control my own body on hold. Some years later, when the disease returned, I again started thinking whether hypnosis could help. I searched the Internet looking for any literature on the subject and came across a small study that was performed by Dr. Francisco Tausch at Johns Hopkins University, on hypnosis and psoriasis..

I invited Dr. Tausch to speak at the 2005 IPPF Annual Meeting in Arlington, Virginia, on this subject because his research indicated that hypnosis might be helpful in treating psoriasis.

Regrettably, his work on the possible connection was not yet complete. Could hypnosis help with pemphigus and pemphigoid? That is an unanswered question. However, from my two years preparing for my certification, and from my practice of hypnotherapy, I have learned for myself and from several people I’ve worked with that it reduces stress levels. This can open up one’s ability to look at life in a different way. I’ve been in remission — no drugs – from PV for 12 years but I have a high anti-Dsg3 titer count, making me very susceptible to lesions. Hypnosis has helped me reduce my stress so that I can notice my triggers if I get an oral lesion (which I do from time to time). As with any case study, it is not clear if the hypnosis has helped me to be successful in remission and to have a minimal, manageable number of lesions, but I believe that the power of hypnosis has allowed me to take some control over my body.

Because doctors often cannot spend a lot of time with an individual patient, the emotional component to treatment (their bedside manner) is often minimal. Hynotherapy can be an extremely helpful factor in the emotional recovery of people with illnesses. When we are under stress because of an illness, our perspectives change. We tend to view things differently — whether positive or negative. We notice changes in our bodies we might not have noticed otherwise. What hypnosis can do with stress (and also pain) is to reduce its intensity and often change our perceptions of our feelings.
We often tend to ignore our emotional needs when faced with disease. We hide our feelings making them less important than our physical state. As humans, we are all physical, emotional and spiritual beings. The only way to really bring health and well-being in a time of crisis is to acknowledge when dealing with illness, we must deal with the whole person.

664715_11160870-pillRare diseases, including several autoimmune disorders, are getting more attention from drug-makers, according to a new report by the Pharmaceutical Research and Manufacturers of America (PhRMA), a consortium of 36 US-based pharmaceutical and biotechnology companies. In 2012 alone, 13 drugs for orphan diseases (“orphan drugs”) were approved by the Food and Drug Administration (FDA). Approximately 452 medicines and vaccines are in development for the nearly 7,000 orphan diseases worldwide.

orphan diseases are defined as diseases with fewer than 200,000 patients. In total, however, across the nearly 7,000 orphan diseases, 30 million people in the US, or about 10% of the population, are affected by an orphan disease. The pemphigus and pemphigoid (P/P) diseases are considered “ultra-orphan” diseases because they are extremely rare. It is estimated there are only about 50,000 new P/P cases each year worldwide, with only a few thousand of those being in the US.

Rare diseases tend to be more complex than common diseases, meaning that there are a number of factors that combine to cause disease. In the case of P/P, while there seem to be genetic risk factors, how these contribute, singularly or in combination, and to what extent the environment (like diet and other conditions that are present) also contributes is not well understood.

Somewhat fortuitously, complex diseases represent the next great frontier for drug developers. Having tapped into the ‘simpler’ diseases, making great strides in treatment of conditions like high cholesterol, these ‘low-hanging fruit’, as drug-makers like to call them, have been consumed. It is truly a time of paradigm-shifting mentality among drug makers.

That said, the costs of developing new medicines is extremely high, so companies must make their choices wisely. If we were to calculate the amount that pharmaceutical and biotechnology companies spend on research and development yearly and compare that to the number of drugs that are approved for clinical use by the FDA each year, the cost per successful drug is a staggering $1.2 billion. It’s not difficult to imagine, then, why companies aimed at developing new drugs are most interested in those that can recoup these huge costs — for instance, by developing drugs for very common conditions and risk factors such as diabetes and high cholesterol. As well, given the complex nature of rare diseases, they are not necessarily among the ‘low-hanging fruit’ that some diseases represent.

To incentivize companies to prioritize new drugs for rare conditions, they may apply for orphan drug status through the FDA, a result of passage of the Orphan Drug Act (ODA) of 1983. With this status, a drug receives seven years of market exclusivity. Market exclusivity is particularly appealing to companies developing drugs because the seven-year exclusivity period differs from laws applicable to other drugs in that it does not begin until the drug is approved by the FDA approval.

The ODA is considered a resounding success. Since its inception, there have been more than 400 medicines approved for a total of 447 orphan diseases. As well, there are hundreds of new medicines in development, including an impressive list available in the PhRMA 2013 report (

While not all of the 452 orphan drugs in development will be approved for patient use, this is certainly a lot of activity. A search of the list included within the PhRMA report, as well as a search of (that lists all clinical trials in progress), shows a handful of drugs in testing for conditions related to or directed at P/P.

There are 18 new orphan drugs in phase I-III trials (there are three phases of clinical trials and drugs must pass all of them, indicating reasonable levels of safety and meaningful efficacy-effectiveness in treating the condition) that are indicated for autoimmune disorders.

New drugs are not the only source of treatment for disease. Another source is to use an existing drug, developed for another condition, for a different indication. Such is the case with Rituxan® (rituximab), which was originally developed for Non-Hodgkin’s lymphoma. In that disease, B cells of the immune system bearing a marker called CD20 (thus the name CD20+ B cells) have gone awry.

Since P/P shares this hallmark, Rituxan® has been successfully used ‘off-label’ for P/P. It is an antibody-based drug, which requires it to be injected into the patient. In general, any drug that acts as a suppressor of the immune system (immunosuppressant) is a potential candidate for treating a range of auto-immune conditions, including P/P. CellCept® (mycophenolate mofetil), another immune system suppressor that was developed for transplant patients to help prevent the body’s rejection of the ‘foreign’ organ, has recently been approved for use in P/P.

Besides the high cost of developing new drugs, companies that seek treatments for orphan diseases face difficulty in finding enough patients to participate. Indeed, patients tend to be dispersed geographically and may include small children. Physicians and patients who are interested in participating in trials or gaining more information should visit

Within the P/P community, the IPPF is also a great resource for learning about clinical trials. Members of our medical advisory board serve as investigators on trials and being in our patient database could lead to a company reaching out to you about participating in a trial.

For instance, among the new drugs aimed at treating P/P, drug-maker Novartis is studying VAY736, an antibody-based drug aimed at another B cell marker called BAFF-R. The study is in a very early stage and should be recruiting patients soon.

The time is ripe for development of new drugs for complex orphan diseases. The surge in new medicines in the first 30 years since the ODA should accelerate as less ‘low-hanging fruit’ exist for companies developing new drugs.

Season’s Greetings! It’s that time of the year again and here at the office we are getting ready for 2014. But we still have another month to go, and that means finishing up 2013 with a bang!

Kate Frantz is settling in and getting the Awareness Campaign up and running; Monique Rivera has been busy processing donations and keeping the information flowing; Kevin Cruz has been working on patient and caregiver handbooks; Isaac Silva has been doing some web site work while learning more about the IPPF; Marc Yale and the Peer Health Coaches have been helping patients at an astonishing rate; and the Board of Directors and our Medical Advisory Board continue to be instrumental in shaping our future.

2013 Holiday Fundraiser. This fundraising season is shorter than usual with Thanksgiving falling where it did, but so far this has been one of our best efforts in recent years. Along with first-time supporters like Rana, Hartmut, Chris, Patricia, and Bob it has been great to see the names of long-time supporters like Lillie, Joan, Alice, Yvette, Carol, Ellen, Jay, Sonia, Ed, Therese, and dozens of others who continue to support our important work. If you have not donated there is still time. And make sure to date your check accordingly so you get your 2013 tax-deduction!

Awareness and Education. If you missed the August buzz on Facebook, Rebecca Oling and MAB member Dr. Animesh Sinha were guests on Good Morning New Haven (Connecticut) talking about pemphigus, pemphigoid, and the IPPF. She followed that up with a trip to Houston, Texas, to participate in a 4-hour long video shoot for IPPF that will be added to the Giving Library ( Add to that scouting the globe for patient educators, helping people on Facebook, traveling to sit with patients and their families, working full time, and being “Mom, wife, daughter, and sister” and you can see why Rebecca is my hero!

What do you get someone turning 20? How about a party in Chicago! The IPPF celebrates its 20th Anniversary in 2014 and we are planning an evening of food, friends, and fun at the 2014 Patient Conference. On Saturday evening (April 26, 2014) join us for dinner, our Annual Awards, and an Anniversary tribute followed by a Casino Night fundraising event. More information will be available soon! Proceeds go directly to our Patient Support programs. If you’re in Chicago, I hope to see you there!

2014 is now a couple minutes closer than it was before you read this letter. With Autoimmune Disease Awareness Month, Rare Disease Day, Pemphigus & Pemphigoid Education and Awareness Month (New Jersey…come on NJ SJR77!), 17th Annual Patient Conference, and more on the horizon – we need your help! If you’re interested in spreading the word and mission of the IPPF, call or email me and let’s do this together!

Thank you, Happy Holidays, and from my family to yours – Happy New Year!