Author Archives: Janet Segall

A diagnosis of pemphigus or pemphigoid typically means some sort of systemic medication. Many doc- tors start a patient off with prednisone for the first couple of weeks, and then add another drug to help reduce the dose of prednisone.

When I was diagnosed some 30 years ago, prednisone was the only drug being used. Imuran had just started appearing on the scene. My doctor didn’t know if it was an option, so we tried methotrexate; and that caused too many problems. Being diagnosed with PV at 37 was not something I handled very well. It took time. A lot of it. I was living in Berkeley, California, and alternative medicine was start- ing to become very popular in the ar- ea. I was having difficulty handling prednisone so I started augmenting my healing with Chinese medicine, Bio- feedback, Linseed oil, and soybeans. I tried tea that tasted and smelled horri- ble (my roommates were not too hap- py about that). I drank a tablespoon of Linseed oil every day, and cooked raw soybeans that I made into soybean pat- ties and ate twice a day. I don’t know scientifically if any of the things I did back then worked, but they helped me live better with prednisone. Along the way, I learned some incredibly helpful relaxation techniques I still use to this day. After many years living and learning as much as I could about the diseases, I know it is important for someone with pemphigus or pemphigoid to avoid things that might enhance the immune system, such as alternative medicines, vitamins, or foods rich in spirulina and echinacea. These boost your im- mune system and can negate the ef- fects of immunosuppressive drugs being used to get disease activity under control. Typically a person uses alter- native medicines and diet to try and stabilize the immune system. My per- sonal advice is that if you decide to try Chinese medicine, make sure none of the ingredients will harm you in some way. A specialist should know the right combinations to use but always discuss this with your physician BEFORE mak- ing any changes to your diet. Dr. Sarah Brenner (Israel) conducted small studies several years ago on certain foods and how they affect pemphigus and pemphigoid patients. Even though they were not double- blind studies and were very small in size, she was able to theorize that foods from the Alum group might cause problems for people with pemphigus. These foods included onions and gar- lic. Mediterranean countries tend to eat a lot of onions and garlic, so deter- mining if they pose a problem for you might be challenging. I am very fond of both onions and garlic so I decided I would test myself. At the time I was clear of lesions but still on drug therapy. For three days, I ate two small cloves of garlic a day on “rice cake pizzas”. Three days later I no- ticed I had a couple of new lesions. I stopped eat- ing the garlic and two days later the lesions disap- peared. I waited several weeks (enough time for the garlic to leave my system) and I tried it again. The same thing happened, as well as a third time.

I came to the personal conclusion that eating a large amount of garlic consistently was not a good idea for me. I found the same thing happened with large amounts of onions and, believe it or not, sour- dough bread. I discovered testing foods myself less- ened my overall disease activity and allowed me to identify what foods and approximate what amounts were going to result in lesions. One of the most helpful things I tried was bio- feedback and Transcendental Meditation. Before I was diagnosed with PV, I went to the Transcenden- tal Meditation Center in San Francisco and learned some methods for relaxation. Biofeedback showed I was able to significantly reduce my stress quotient. Because of that early success, I recently became cer- tified in Hypnotherapy. Now, I use hypnotherapy on myself and to help others reduce stress. There isn’t any disagreement that stress reduction is an important part of healing from disease — not just pemphigus and pemphigoid, but any disease. Dr. Terry Wolinsky McDonald (IPPF Board of Direc- tors and a regular Quarterly columnist) has written many articles on coping with stress. I strongly agree with her that it isn’t about the stress itself as much as it is the way we deal with the stress. There are ma- ny different methods of stress reduction so finding one that fits into your life is a key to effective heal- ing and coping. Sometimes being proactive with disease can be difficult. Once the medicine starts to work, many people want to pretend nothing was wrong in the first place. Some simply take their medicine, eat whatever they want, and avoid physical activity. I’m guilty! We just pretend we’re fine hoping a positive attitude will be enough. Having a positive attitude is extremely important, but pretending we don’t have to take care of ourselves can be hurtful. The drugs for these diseases can cause damage to our bodies and a proactive, positive attitude can help promote healing faster. I have been in remission now for about 15 years, 10 drug-free. I watch my eating habits and notice any changes certain foods cause. Taking prednisone off and on for 10 years has had a negative effect on my spine and joints, but I find ways to exercise: mild yo- ga, walking, hot pool aerobics, and stretching — and last but not least — relaxation. I believe a comprehensive approach to healing not only helps us heal our disease, but can help us keep a positive attitude as well.

Will Zrnchik, IPPF CEO, along with former board member Dr. Sahana Vyas, kicked off the weekend late Friday afternoon. Will provided an overview of the weekend to come and emphasized the importance of community participation in the IPPF. Volunteerism, fundraising, and participation in programs are all ways everyone can show support.

Dr. Animesh Sinha (University of Buffalo) began with his session on pemphigus. He discussed the clinical features of the disease, and how the specific antibodies that attack the glue in your skin cells are formed, as well as what it looks like when the cells come unglued under a microscope. Dr. Sinha talked about the genetic markers for pemphigus and how the incidences are seen more often in certain groups of people than others. He gave newly diagnosed patients a really good picture of what it looks like to live with the disease. In closing, Dr. Sinha encouraged patients and their relatives to donate blood to further his research on the causes of pemphigus and to create better treatments.

Dr. Amit Shah (University of Buffalo) presented on the IPPF Registry and what the data tells us. Pemphigus and pemphigoid are rare diseases so having a registry helps promote better understanding of the diseases around the world. A primary goal of the study is to investigate different characteristics of patients enrolled. The registry shows gender prevalence, average age, and racial/genetic breakdowns are. The registry data tells us more women diagnosed, and the average age of onset is 40-60 years. The data indicates women have mucosal activity more than men, while men are more prone to skin lesions. These findings will help researchers and physicians expand their knowledge of the disease.

Dr. Razzaque Ahmed (Boston Blistering Disease Clinic) rounded out the evening with an overview of pemphigoid. He explained how pemphigoid was different from pemphigus by location and look of the blisters. He said mucous membrane pemphigoid (MMP) and cicatricial pemphigoid (CP) typically affect middle-aged (and older) individuals. He explained the differences between bullous pemphigoid (BP) & MMP stating with ocular MMP the trachea can also be affected. Dr. Ahmed emphasized that early diagnosis and treatment is essential, especially with MMP (individuals can lose their sight or breathing capacity due to scarring).

Sahana and Will opened Saturday’s session with a warm welcome and were followed by IPPF Board President, Dr. Badri Rengarajan. Badri began with the importance of the IPPF to people with P/P – newly diagnosed, in a flare, in remission, and everywhere in between. He told the audience the Foundation makes all its resources available to patients, caregivers, family members, and medical professionals free of charge. Knowing this, it is equally important for the Foundation going forward to continue to help others for years to come. Badri mentioned four ways the Foundation helps patients: improving quality of life; reducing diagnostic time; understanding and coping with flares; and supporting new diagnostic methods and research. The asked the audience to reach out to the Foundation when they need help and to support the Foundation to increase our services.

Dr. Sergei Grando (University of California – Irvine) discussed prednisone (what corticosteroids are commonly known as) and how steroids work. He mentioned side effects of steroids and affects on patients. He suggested the treatment process should be a team effort. Dr. Grando also spoke on adjuvant drugs (to reduce steroid doses) and the use of IVIg and an immunosuppressive to reduce disease activity.

Dr. Razzaque Ahmed returned to the stage for a talk on treatment side effects. He commented on how extreme cases of P/P can end up in burn units — not an appropriate treatment. Dr. Ahmed suggested a patient’s treating physicians should be told what drugs are being taken so treatment for additional problems is carefully coordinated. He talked about prednisone side effects and the importance of keeping track of them to share with your physician. He discussed side effects of immunosuppressives (such as Imuran®, CellCept®, and Cytoxan® and their link to cancer), IVIG, Rituxan®, and other treatments. At the end, Dr. Ahmed emphasized open communication with all a patient’s physicians to ensure the best possible care.

Did you know 13 million liters of plasma are collected each year, and the antibodies extracted from this plasma is what makes IVIG? Dr. Michael Rigas (KabaFusion) explained this, and more in his talk. He told the audience how the drug is made, where it comes from, and why it costs what it does. Dr. Rigas then explained how it is administered to a patient, and what patients should expect after the infusion. He said IVIG as a P/P treatment is not approved by the United States FDA. He closed by saying there are many factors to be considered before a patient gets IVIG and to talk with your doctor if you have questions.

Dr. Grant Anhalt (Johns Hopkins University) presented on the physiology of PV. He explained how and why the cells detach from one another. He said many currently-prescribed anti-inflammatory drugs do nothing to inhibit antibody production. He provided a recap of Imuran®, CellCept®, IVIG, and rituximab and how they work on P/P. He has found rituximab has been very successful in the treatment of PV without the side effects commonly found in cancer drugs. Dr. Anhalt described how rituximab destroys maturing B-cells for 6-9 months and how results of several studies showed the success of rituximab in early stages of PV.

Victoria Carlan (IPPF Board member and founder of the Canadian Pemphigus & Pemphigoid Foundation) talked about personal support networks. She opened with her personal PV journey explaining the importance of her support network, and how she used it to live successfully with P/P. This enabled her to find answers and find encouragement. She explained how support networks can build-up physical, mental and emotional strengths.

IPPF Awareness Program Manager Kate Frantz talked about the IPPF’s Awareness Campaign. Building awareness in the medical community is important to reducing diagnostic time for patients. She said we can all help with awareness in our won ways. One way is becoming an Awareness Ambassador in your community. Awareness Ambassadors will go into their community to spread P/P awareness. Others ca write to newspapers, speak at professional gatherings, and engage others in your community. She stressed the importance of spreading awareness through social media to help create a “brand” others can relate to the IPPF and P/P.

One of the IPPF Awareness Campaign’s Patient Educators, Rebecca Strong, discussed additional ways to spread awareness. People can write to their federal, state, and local representatives encouraging them to be involved with improving your health and supporting legislation that benefits all of us. Be your own advocate and ask those you know who might be able to help advocate for you. There really truth to the Power of One.

Dr. Firdaus Dhabhar (Stanford University) presented on stress & autoimmunity. Dr. Dhabhar discussed the biological responses that happen with stress are not always negative, but can be positive. Short-term, acute stresses (such as surgery, vaccinations, etc.) can enhance positive immune response. However, chronic, long-term stresses have negative effects on the body. With long-term stresses, the goal is to minimize their effects with better sleep, nutrition, exercise, calming activities, or whatever works for you.

On Sunday, the patients took center stage for a patient panel discussion. Our panelists included IPPF Senior Peer Health Coach Marc Yale (MMP/OCP), Becky Strong (PV), Peer Health Coach Mei Ling Moore (PV), IPPF Board member Rebecca Oling (PV), and Janet Segall (PV). Questions covered personal best practices, dealing with side effects, and product recommendations.

This successful segment was followed up with a 90-minute teleconference in May 2014 where over 80 people registered with 40 people on the call at any given time.

Following the patient panel, the IPPF hosted several workshops. These smaller, focused sessions were on topics such as different stress reduction methods, diet and nutrition, oral care, ocular concerns, IVIG, and reimbursement issues. There was also a successful focus group centered on the Awareness Campaign.

Once the workshops concluded, attendees gathered back in the main room for a Q&A with some of the weekend’s speakers. Questions were asked, debated, and answered by experts from different specialties.

Will and Badri reminded everyone we all can be involved in making sure newly diagnosed patients get the help they need by participating in IPPF programs and donating to our cause. And during his closing remarks, Will announced the 2015 Patient Conference will be in New York, and information will flow as it is available.

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 (www.asch.net) 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.

I remember one of the first telephone calls I received from a woman living in Northern California. It was 1995 and the Foundation was just getting started. She had been diagnosed 30 years earlier when she was 19. Over those 30 years she never had anyone to talk to about her PV. Her husband didn’t want to talk about it. She didn’t want to burden her children with it. She felt alone. She was so happy when she found us and finally was able to lift her silence about the illness.

And I heard many similar stories throughout the years.

Because this is a rare disease, finding information and support is often difficult. Back in 1995, finding any information on pemphigus/pemphigoid was next to impossible. You had only your doctor to rely on to know the answers and often the doctors didn’t even know. Since the advent of the Internet, there is a lot of information but it can be confusing as to what information is the information you need. This is why the IPPF is so important. Besides giving patients correct information, it provides help understanding the pertinent information; it provides emotional support; and it provides comfort – all of it from staff and many wonderful caring volunteers. Volunteers are a big the reason why the IPPF is still going strong after so many years.

Many of us have been in remission a long time – no disease and no drugs (or maybe just a small dose). We go about our daily business not wanting to think about PV, BP, MMP, or whichever of the diseases we’ve learned to live with. But there are many souls out there who are newly diagnosed or are going to be diagnosed, or are dealing with many issues associated with the diseases even years after diagnosis. We can help. We can give people the support they need by volunteering for the IPPF. It is important for the IPPF and for the patients to be able to connect with those of us who have “been there, done that!” Staying connected both to the IPPF and the clients can be so beneficial and mean so much to so many.
We have an unusual perspective – we’ve been where they are. We know what works and what doesn’t. Even if we are all different and our level of disease activity is so different, there are many experiences that we all have in common. Those of us in remission can be a Godsend to people in your area who need your help. With so few of us around, everyone can provide some level of expertise that will help someone get through a bad day, or a scary day, or a “hey, I had a great day today!”
One thing I’ve noticed about helping others, it helped me too. Even though I’m off all drugs, I still get an oral lesion from time to time. I think most of us in remission probably do. For a moment, maybe I worry if the PV is coming back, but I still go about my business for the day and put it out of my mind. But it always seems to be in the back of mind anyway. When I’m helping others, the last thing I think about is my PV. For some reason helping someone else deal helps me put it all in perspective.

I know that not everyone can be a volunteer … but we all can support the IPPF in one way or another. It’s an important organization for all of us whether we are in remission, have a small amount of activity, have a relative or a friend with one of the blistering diseases, or just want to make sure that no one has to suffer alone with pemphigus or pemphigoid.

 

The IPPF is important for all of us. Volunteer if you can. Donate when you can. We need to make sure the IPPF is here for all of us today, tomorrow and in the future until we have a cure.