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Having a flare after being in remission can be a scary and frustrating experience. Thoughts run through your head about your previous experiences and you may wonder if your disease will be as bad as it was before. When you have the flare, it is important to recognize it and take the challenge head-on. It’s easy to become stressed from the uncertainty and lack of control, but remember that stressing will only make things worse. Here are some tips to reduce the intensity and time that you may have the flare.

1.      Schedule an appointment with your doctor immediately.

2.      Have your doctor give you a clinical diagnosis or get a biopsy done to confirm the flare. There are many differential diagnoses for your disease so you want to be sure it is what you suspect.

3.      Discuss with your doctor a treatment strategy and begin right away.

4.      Track your disease activity in a log, this will help you determine if you condition is improving.

5.      Follow up with your doctor regularly and advocate for yourself. Seeing your doctor every 4-6 weeks is recommended. If you have an aggressive flare you may need to see your doctor more frequently.

6.      If you need support, contact the IPPF and talk with a Peer Health Coach. Coaches are available to answer questions and help you decide how to best handle your flare.

It is common for flares not to be as intense as your first experience with the disease, but all patients have different experiences. The important thing is to be proactive and stabilize the disease activity as soon as possible. Flares are part of living with pemphigus and pemphigoid but if they are handled quickly and with a positive attitude you can eliminate them sooner.

Remember, if you have questions to “Ask a Coach” because when you need us we are in your corner!

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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.

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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.