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If you’re like me you do a lot of shopping online. It’s convenient. It’s safe. And sometimes the prices just can’t be beat. To make sure I get a great deal from a reputable company, I do most of my shopping through AmazonSmile (smile.amazon.com, part of Amazon.com).

My AmazonSmile homepage

My AmazonSmile homepage

AmazonSmile (smile.amazon.com) is a simple and automatic way for you to support the IPPF every time you shop, at no cost to you. When you shop at smile.amazon.com, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to the IPPF.  To shop at AmazonSmile simply go to smile.amazon.com from the web browser on your computer or mobile device. You may also want to add a bookmark to smile.amazon.com to make it even easier to return and start your shopping at AmazonSmile.

There are tens of millions of products on AmazonSmile are eligible for donations. You will see eligible products marked “Eligible for AmazonSmile donation” on their product detail pages. Recurring Subscribe-and-Save purchases and subscription renewals are not currently eligible.

The circled area lets you know the product is an AmazonSmile participating product.

The circled area lets you know the product is an AmazonSmile participating product.

It’s easy to use because you use the same account on Amazon.com and AmazonSmile(smile.amazon.com). Your shopping cart, Wish List, wedding or baby registry, and other account settings are also the same. When you visit AmazonSmile (smile.amazon.com) for the first time you need to select the International Pemphigus Foundation to receive donations from eligible purchases before you begin shopping. Amazon will remember your selection, and then every eligible purchase you make at smile.amazon.com will result in a donation to the IPPF.

amazonsmile

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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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When taking care of a patient or loved one, a caregiver has to change their schedule to accommodate the tasks of caring. This change may affect the caregiver’s free time and they might have to learn to say “no” more than they would like. Sticking to the routine is important, but so are the needs of the caregiver. For example, going to the movies may interfere with the caring schedule. However, caregiving plans, prioritizing tasks, and external support can help both the patient and the caregiver.

Determining one’s limits by making a list of important tasks can make saying “no” easier. Try asking a friend or family member to help with some of the most frustrating and time consuming tasks. If the friend or family member can’t help, there are public and private organizations that can for little to no cost. Many churches and synagogs have their own volunteer networks that can do minimal work for free.

There may be tasks that can’t be avoided and you have to do them yourself, but it will be more relieving knowing that some of the other tasks were taken care of. If you’re going to ask others for help, make sure that you are direct with your statement. Avoiding the main reason, or trying to make something sound better, will only add to frustration and most likely end up with your friend or family member not understanding the message. Communication is key!

Sometimes as a caregiver, your outside-of-care giving plans do not work out exactly as planned. People have errands, and not everyone has the time to cook a nice meal for the family. As a caregiver, try and think of creative solutions to your problems that fit with your schedule and everyone else’s schedule. Even though it may sound hard, staying creative will keep others interested and you’ll have a solution to your problem. For example, if there’s no one to cook the meal, suggest a potluck dinner, or go to a dessert-only dinner, that way people aren’t worried with having to cook and still have time to do what they wanted to do beforehand.

Caregivers should remember sometimes things don’t work out as planned. And when that happens, do not lose all confidence and let it affect your emotional and/or physical health.The best option is to let it go and move on. This will offer a better outcome for the caregiver and the patient.

It’s easier to say no with the help of a support group. The people in the group have been in similar situations and are willing to help you become an assertive and confident caregiver. With help, you will be able to get time to relax and wind down. Plan your social-time around your schedule and around the schedule of who is helping you. In your free time, go read a book, take a walk, etc. Doing this may leave you happy and help relieve stress. This way, when you return to the patient, you’ll be happy and refreshed.

Being a caretaker is a hard and stressful job. But with the help and support of others, you will be able to fine-tune your schedule to something that allows you to ensure the care of the patient AND go out and enjoy yourself.