The IPPF Patient Education Conference is an event that the pemphigus and pemphigoid (P/P) community looks forward to each year. For the IPPF staff, it’s remarkable to see the joy and relief that patients feel when they meet with other patients and learn valuable information about their diseases. When we held our first virtual Patient Education Conference in 2020, our goal was to connect with patients despite the inability to be together in person. Immediately following that event, we started planning the 2021 conference that was held this past October. We knew that the planning process would require us to be flexible due to the COVID-19 pandemic, but we hoped that with vaccines on the horizon, we’d be able to hold an in-person event in 2021.

However, it became clear last spring that an in-person conference was unlikely due to ongoing COVID-19 case numbers and the uncertainty of travel guidelines. Nevertheless, the IPPF staff pored over the planning of another great virtual conference with the goal of connecting P/P patients, caregivers, and others affected by these diseases. Luckily, we had the resources and experience from planning a prior virtual conference, so we focused on the ways we could improve the 2021 Patient Education Conference.

I often talk to my two young children about silver linings, especially since the start of the COVID-19 pandemic. (Spending time at home together, FaceTiming more often with extended family, and Target drive-up are examples I often give to help ease the pain of events, school, and playdates getting cancelled.) One of the silver linings about the virtual conference is the ability to reach more attendees across the world. This year, we were able to reach even more conference attendees than last year, with 762 registered attendees from 46 countries.

The 2021 virtual conference started off with a welcome reception that also included regional support group breakout meetings. Since the start of the COVID-19 pandemic, finding creative ways to connect with each other has been imperative. At the start of the pandemic, IPPF support group leaders throughout the US have done an amazing job of hosting virtual meetings in order to maintain connections. Attendees at this year’s conference had the opportunity to gain more information about these support group meetings, as well as details about starting a group in their area.

The first day of the conference continued with Staci White’s remarkable story about her journey to diagnosis. Staci is an IPPF Board of Directors member, and her strength is inspiring. Friday’s agenda also included an introduction to P/P, a session on the mind-body connection, and a peer health coach panel discussion.

Day two began with sessions focused on oral care, topical treatments, and managing corticosteroids. Pemphigoid gestationis patient Ashton Brown then explained her harrowing experience with the disease and its effect on her health, pregnancy, and the delivery of her baby boy. Ashton reached out to the IPPF after going viral on TikTok about the condition. The day closed with a general Q&A panel hosted by Dr. Aimee Payne, Dr. Neil Korman, and Dr. Nasser Said-Al-Naief; a session on navigating insurance and Medicare; and an informative discussion on COVID-19 and P/P.

The final day of the conference kicked off with sessions on the role of immunosuppressants, rituximab/IVIg and next generation therapies, and research. IPPF Executive Director Kevin Mead discussed the impact of international support groups in the United Kingdom, France, Germany, and the exciting work Noel Mudibo is doing in Kenya. The final session of the conference focused on advocacy efforts, including recent legislative efforts and ways to get involved.

As an IPPF staff member who works primarily behind the scenes, I don’t often have the opportunity to see patients and physicians face-to-face. This year, more than ever, I was able to experience that connection and strength within our community. Having a rare disease is hard; no one understands that more than P/P patients. The willingness to help one another, even through a computer screen, will always be a silver lining I will remember from the COVID-19 pandemic. We can’t wait until we can all be together in person again, but until that day, the IPPF is here for you.

Anna Lane is the IPPF Communications and Marketing Manager. She lives in Denver, CO, with her family.

March 19, 2021
The National Organization for Rare Disorders (NORD) Rare Action Network released the following statement in response to how the American Rescue Plan may impact the rare disease community.

President Biden signed the American Rescue Plan into law on Thursday, March 11th! This law contains many important provisions to help our country through the COVID-19 crisis. Here are 5 changes the American Rescue Plan makes that matter to the rare disease community:

Increases funding and support to help Americans afford private health insurance through healthcare.gov or their state marketplace, and provides protection from paying back excess subsidies due to income changes.
Provides 100% premium support for COBRA insurance through September 30 for individuals who have lost coverage due to involuntary layoffs or reduced hours.
Provides additional federal support for vital home-and community-based services that enable many rare disease patients to live in their home states rather than moving to a facility for care.
Expands state coverage to help uninsured Americans access COVID-19 vaccines and treatment and curb the spread of the virus.
Provides new incentives for states to expand their Medicaid programs and provide health insurance to millions of low-income Americans.

The federal government and many states have also opened a special three-month enrollment period through May 15 to obtain health insurance. Check out healthcare.gov to learn more about your options.

Visit the Rare Action Network website.
Visit NORD’s website.

Every day, our patient services team hears stories from our community about what it’s like to live with pemphigus and pemphigoid. From getting diagnosed to finding the right doctor to thriving post-treatment, many patients express similar frustrations. And yet, there’s a common hope that runs through many of the stories we hear at the IPPF.

Each week through August and September, we’re featuring a story that highlights a specific part of the patient journey. OUR HOPE is that by sharing stories from our community, more patients and caregivers will realize they are not alone.

Our third story in the Patient Journey Series comes comes from IPPF Peer Health Coach, Mei Ling Moore:

I’ve been a peer health coach (PHC) with the IPPF since 2012. However, if you had told me back in early 2001 that this is what I would be doing today, I never would have believed you. I had never even heard of pemphigus vulgaris (PV) then, much less known about rare autoimmune diseases.

I’ve always believed that everything happens for a reason and that no matter how good or bad it is, there is a destiny in the event. When I finally was diagnosed in February 2002, I didn’t think, “Why me?” Instead, I thought, “Why not me?” I also couldn’t figure out why I thought that! When I reached remission 10 years later in 2012, I was asked by the IPPF to become a PHC.

My journey with PV started in early October 2001. A friend and I were out to dinner one night. While we were waiting for the valet to bring us our cars, I felt an itch and a tiny bump on my upper back. I asked my friend to look at it and whether it looked like a bite. She thought it did. When I went home, I put some aloe with vitamin E on the bump and covered it with a small bandage. The next day there were two more bumps. In the ensuing weeks, I would find about 10 more bumps. Pretty soon, the bandages weren’t large enough to cover them. They grew so big that even a gauze square wasn’t enough to cover them. I bought Telfa pads and paper tape, because it turned out I was allergic to adhesive as well. These “bites” kept growing. My upper back was completely covered, it was raw, oozing, and extremely painful. It looked like I had open wounds from being hit by shrapnel.

Clothing hurt. A strand of hair touching my back felt like a razor blade was cutting into me, so I had to cut off all my hair. I couldn’t shower because the water hitting my skin hurt. Positioning myself on my mattress was painful and took fifteen minutes. Sleeping was a challenge because of the pain and my skin sticking to the sheets. Three months of misdiagnoses and money spent on the wrong medications prompted anxiety, fear, and anger.

My dermatologist, Dr. David Rish in Beverly Hills, was out of town for the holidays, so I saw three of his colleagues who, month after month, kept diagnosing me without success. When Dr. Rish returned at the beginning of January, he said, “I think I know what you have,” and he sent me to a phlebotomist to have a blood test. The phlebotomist had to make a special phone call to her boss asking what to look for since she had never done that type of blood draw before. Dr. Rish also told me not to go on the internet. Who would listen to that? When I searched for pemphigus, I panicked. I read that there was a five-year mortality rate. Did that mean that I had five years left to live? I went into an immediate emotional dive.

Donate today to connect more patients like Mei Ling get the help they need.

I was finally diagnosed by an associate dean of dermatology at UCLA in February 2002 and was started on 100mg of prednisone. Sadly, this doctor passed away two months after seeing me, and I no longer had a doctor to treat me for this scary condition. Dr. Rish kept refilling my prescription while I went on the hunt for a doctor who could treat me. I found the IPPF online, joined the email discussion group, and went to a local support group meeting with a dermatologist as the guest speaker. I also met Janet Segall, the founder of the IPPF.

I started seeing the doctor from the support group meeting, and she kept me on prednisone. The blisters had spread from my upper back to my scalp, and then to my mouth. Three or four months passed before my gums started to peel back. I was scared I was going to lose my teeth. Then the blisters started under my tongue and inside my cheek. Eventually, blisters were in my larynx. I sounded like a frog, and I couldn’t swallow without pain. Ensure was my breakfast, lunch, and dinner for a few weeks. To this day, I still have to cut out clothing labels from new clothing as they irritate my skin, and I hardly ever go out in the sun as too much exposure can lead to a disaster.

In the beginning, my dentist said he had vaguely heard of PV. He didn’t know very much about it and didn’t seem interested to learn more. My dental hygienist had never heard of PV either, and I explained it to her. I asked her to be very careful with the instruments. She tried, but there was quite a bit of flinching. I kept educating each new dental hygienist, as they rotated and worked various clinics at once.

Because I was hurting from PV, I rarely went out and cut back on seeing friends or going to temple. I became quite isolated. However, I stayed active online with the PV discussion group, and whenever there was a support group meeting, I attended and helped out.

I attended my first IPPF Patient Education Conference in Los Angeles in 2007, followed by the conference in San Francisco in 2013, and I was very involved with the IPPF whenever I could help out. I have been in remission since September 2012 and have not had an episode since.

I love what I do as a PHC. I remember what it was like for me when I was first diagnosed with PV, so I can empathize with the patients who contact the IPPF. Along with IPPF Executive Director, Marc Yale, I also organize patient support group meetings for Southern California patients, and I regularly give a workshop at the Patient Education Conference on how to de-stress. I feel blessed to be able to help others and give back in service the same kind of support I was given. It helped me survive this rare autoimmune disease. I can’t imagine doing anything else with my life right now. I am blessed to be a part of the excellent IPPF team.

Your donation helps patients like Mei Ling connect with the resources they need to live—and thrive—with pemphigus and pemphigoid.

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Check out the rest of the Patient Journey Series:

Week 1: Halima’s Diagnosis
Week 2: Rudy Takes Control
Week 3: Mei Ling Pays It Forward
Week 4: Kathleena Finds Strength as Both a Patient and a Doctor
Week 5: Fred’s Perspective: Connecting with Other Patients
Week 6: Toby’s Luck

Our second story in the Patient Journey Series comes from Rudy Soto:

My journey with pemphigus foliaceus (PF) began in 2009; however, my symptoms began in 2008. I have been in remission since 2016. It has been a long journey, and I have encountered many bumps and detours along the way. I would not have reached remission without the support from my wife, Jennifer, of 26 years, my family and friends, and the IPPF.

When I was diagnosed, I asked many questions and felt alone. Why me? Is it contagious? Is it fatal? I felt deeply depressed and didn’t want to socialize with others in order to avoid the questions, stares, and worries about what people were saying about me. Unfortunately, I missed many of my daughter’s high school soccer games because of this.

Two years after I was diagnosed and on oral medication, my wife found the IPPF online. She noticed that there was a conference in San Francisco and wanted to attend. I was hesitant due to the lesions on my face. I didn’t want to be around strangers, but she convinced me to go. It turned out to be a great experience, and I discovered that I was not alone. There were other patients that shared the same feelings. Some had already reached remission, and some were looking for more information like me.

While I was at the conference, I met a man from Hawaii who also was diagnosed with PF. We talked for hours, and I still keep in touch with him. When the conference ended, I was grateful that my wife encouraged me to go. I have now attended five patient education conferences, and I learn something new each year. After San Francisco, I realized I needed to control my disease and not allow my disease to control my life. “Can’t grind me down” became my personal motto. I try to do everything that I used to do before being diagnosed with PF, though I am careful.

The IPPF has made a huge impact on my life. Staff members have provided me with information, and I was able to connect with a peer health coach (PHC). My PHC became a special person that I was able to count on. She offered words of encouragement and let me know I was not alone—she would be with me on my journey to reach remission. It was because of this experience that I decided to help others in the same way. I wanted to share my story, offer helpful ideas and encouragement, and make an impact on someone’s life.

I reached out to the IPPF about becoming a support group leader in order to help others. This has made an impact on my community and raised awareness. And when I reached remission, that didn’t mean my work with the IPPF had finished. It meant I needed to work harder to continue raising awareness about pemphigus and pemphigoid. You are not alone. Continue to fight the fight and control the disease. Do not let the disease control you.

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Check out the rest of the Patient Journey Series:

Week 1: Halima’s Diagnosis
Week 2: Rudy Takes Control
Week 3: Mei Ling Pays It Forward
Week 4: Kathleena Finds Strength as Both a Patient and a Doctor
Week 5: Fred’s Perspective: Connecting with Other Patients
Week 6: Toby’s Luck

The 2018 IPPF Patient Education Conference was held in Durham, NC from October 12-14, 2018. Our 2018 hosts were Donna Culton, MD, dermatologist and Assistant Professor at the University of North Carolina (UNC), and Ricardo Padilla, DDS, Associate Professor and Director of Maxillofacial Pathology Graduate Program at UNC. Dr. Padilla and Dr. Culton set a high bar for this conference. Guests stayed at the “Mansion on the Hill” DoubleTree by Hilton, Raleigh-Durham Airport at Research Triangle Park. Upon arrival, attendees were greeted by white rocking chairs, porch swings, and a sense of belonging. The hotel provided a relaxing and intimate environment for conference activities. The conference was an amazing opportunity for patients and their support systems to not only have direct access to IPPF staff, but also some of the leading minds who treat pemphigus and pemphigoid.

The conference kicked off with a special “Dental Day” at UNC School of Dentistry. Attendees were welcomed by UNC staff and students at the Chapel Hill campus. Dr. Padilla welcomed everyone and introduced me as the morning’s first speaker. I shared my journey with pemphigus vulgaris (PV) and encouraged everyone to find their voice and strength after being diagnosed with pemphigus or pemphigoid (P/P).

UNC dental hygienists Jennifer Brame, Elizabeth Kornegay, and Jennifer Harmon then spoke about oral hygiene and how to use different products when patients have oral lesions. Next, Dr. Katherine Ciarocca (UNC) and Dr. Padilla discussed the oral side effects of treatments used in P/P. After lunch, attendees were given the opportunity to have an oral cancer screening and a one-on-one dental examination that included self-care techniques. The afternoon also included a discussion panel with me and Dr. Si Om Lim (UNC).

Upon returning to the conference hotel, attendees were invited to a welcome reception on the veranda. It was a perfect ending to the first day of the conference.

After breakfast and receiving their conference gift bags, attendees began day two of the conference with IPPF Executive Director Marc Yale’s welcome and a video from Senator G.K. Butterfield, 1st District, NC, Rare Disease Congressional Caucus Co-Chair.

The first presentation of the day was Kenny Metcalf, a PV patient from California. Kenny shared his emotional journey that led to his career as an Elton John tribute artist. Attendees then had the opportunity to see Kenny perform later that evening during the IPPF Awards Dinner. Kenny’s story highlighted the struggles that many of us have experienced with P/P.

This year, the conference featured separate learning tracks for pemphigus and pemphigoid. This allowed attendees to focus on the information that was most relevant to them. Sessions were specific to each disease and provided excellent information. The pemphigoid session was moderated by Marc Yale and Dr. Padilla. Dr. Janet Fairley (University of Iowa) gave a great introduction to the disease. Dr. William Huang (Wake Forest University) then discussed topical treatments used in pemphigoid before Dr. Russell Hall (Duke University) covered steroids and immunosuppressants.

The pemphigus session was moderated by Dr. Culton and began with an overview of pemphigus by Dr. Grant Anhalt (Johns Hopkins). Dr. David Woodley (University of Southern California) then discussed topical treatments used in pemphigus, and Dr. Adela Rambi Cardones (Duke University) discussed steroids and immunosuppressants.

After a short break, attendees were treated to disease-specific uses of Rituxan® and intravenous immunoglobulin (IVIG) therapy in pemphigus or pemphigoid. Dr. Ron Feldman (Emory University) and Dr. Huang led the discussion on pemphigoid, while Dr. Anhalt and Dr. Culton led the discussion on pemphigus.

On Saturday afternoon, Dr. Luis Diaz (UNC) shared 40 years of research in his keynote address, “Lessons from Endemic Pemphigus Foliaceus.” Dr. Diaz has been involved with the IPPF from its inception. Though primarily based at UNC, Chapel Hill, he has also conducted pemphigus research in Brazil for over 30 years. His research has included disclosing the immunopathological mechanisms operating in PV and pemphigus foliaceus (PF). Dr. Diaz is a true gem in our community.

After the keynote, there was an oral care discussion panel with Dr. Padilla, Dr. David Sirois (NYU), Dr. Nancy Burkhart (Texas A&M), and Dr. Joel Laudenbach (Carolinas Center for Oral Health). Attendees then attended lectures on the genetics of pemphigus and pemphigoid by Dr. Animesh Sinha (University of Buffalo) and “Future Trials of Targeted Therapies in Pemphigus” with Dr. Hall and Dr. Fairley.

Later, Dr. Culton introduced Jeff Weisgerber, a PV patient from North Carolina who has participated in two different clinical trials. Jeff shared his experience with the hope of breaking down barriers relieving potential fears patients might have about study participation. Marc Yale then discussed the IPPF Natural History Study and the importance of patient participation. Dr. Brittney Schultz (University of Minnesota) followed Jeff by discussing quality of life issues with P/P. Kate Frantz, IPPF Awareness Director, held an on-the-spot Awareness Ambassador training before Genentech representatives Jocelyn Ashford, Esther Newman, Kristine Amor Surla, and Kenia Carrillo Perez gave a great overview of Genentech Access Solutions and what they can offer to patients with P/P.

Following the day’s sessions, attendees had just enough time to change before the evening’s program. During the cocktail hour many hoots, howls, and laughs were had at the photo booth. The evening’s main event was the IPPF Awards Dinner, where individuals were recognized for their extraordinary service to the IPPF community. The highlight of the evening was Kenny Metcalf performing as Elton John. When Kenny entered the room, it was as if Elton John from the 1970s had arrived. He sat down at the piano and spoke to the crowd in a British accent, played the piano, and sang. The entire room couldn’t help but swing to the music and sing along. Many of those in attendance showed off their best moves on the dance floor. After a long day of learning, it was the perfect way for attendees to relax with new friends.

Marc Yale opened Sunday by introducing an extraordinary patient with PV, Porter Stevens. Porter shared his patient journey and how it propelled him to use social media to create his legacy and use it as a way to reach others with our diseases. Dr. Annette Czernik (Mt. Sinai Hospital, NY) and New York/Tri-State Support Group Leader Esther Nelson then shared an open discussion about the importance of being an informed patient and the doctor-patient relationship. The first morning session ended with a panel discussion led by IPPF Peer Health Coaches Mei Ling Moore, Rudy Soto, and Janet Segall.

After a quick break, attendees had the choice to attend a variety of workshops throughout the morning. These included “Infections in Pemphigus and Pemphigoid” with Dr. Cardones; “Ocular Disease” with Dr. Julie Skaggs (UNC Chapel Hill); “Drug Development” with Dr. David Rubenstein (UNC Chapel Hill); “Oral Care & Maintenance” with Dr. Nancy Burkhart; “Nutrition” with Kelly Calabrese (PV Patient, Optimal Wellness Solutions); “Women’s Health Issues with P/P” with Dr. Alexis Dieter (UNC Chapel Hill); “North Carolina Rare Disease Advisory Council” with Sharon King (North Carolina Rare Disease Advisory Council) and Tara J. Britt (Associate Chair, Rare Disease Advisory Institute, UNC School of Medicine); “Stress Management” with Mei Ling Moore (IPPF); “Mental Health Issues” with Lynne Mitchell (MES, MEd, RSW, Toronto, Canada); “Wound Care” with Dr. David Woodley; “Men’s Issues with Pemphigoid Disease” with Dr. Ron Feldman; and “Caregiving” with Janet Segall (IPPF).

After the morning sessions, Marc Yale gave his closing remarks.

As the conference ended, it was time to say goodbye to old and new friends. Many new support connections were made, and it truly is a blessing to be part of such an amazing event. The openness of doctors and healthcare providers really gave patients and caregivers access to some of the greatest minds studying these diseases. While we only had a brief time together, it felt like the relationships created will last a lifetime—there is something about talking with somebody “who just gets it.” We hope everyone that attended the conference carries the positive messages with them and knows that we’re all in this together.

Pemphigus and pemphigoid (P/P) patients may agree that it can be very difficult and painful in the early months of their condition. As a pemphigoid patient, I learned how to apply dressings (large and small), developed a schedule of self-care, and adopted a clothing style and activity level that fit my needs. I discussed my care plan with my internal medicine doctor, dermatologist, dentist, dental hygienist, and oral surgeon, who all approved. The following suggestions may be helpful, such as learning how to care for our skin by taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable. Please review this article with your healthcare provider before implementing these ideas.

Self-Care

First, before purchasing any kind of care product, ask your dermatologist if they recommend using or avoiding anything specific. (Take into consideration any allergies, such as latex.) Check with your insurance company and see if they will help pay for any products. Many online stores may be cheaper and offer discounted prices. You may also work with your insurance company or Health Savings Account (HSA) when buying care products.

When applying or changing dressings, wash your hands with soap and water, and use gloves. In accordance with my dermatologist’s guidance, I kept my nails (hands and feet) short to avoid injuring my skin or spreading infection. (Please discuss applying any topical medications with your dermatologist.) For a small area, I applied topical steroid cream and Vaseline with a Q-tip. If it was a larger area (more than 4×4 inches) I squeezed a small film of both Vaseline and topical steroid cream onto my non-dominant gloved hand and applied the mixture onto the affected area with my dominant hand. My dermatologist had previously instructed me on the exact amount to use when applying topical steroid to avoid damaging the skin. Additionally, I made sure that the opening or mouth of the tube of medication didn’t touch my skin in order to avoid infection. Vaseline keeps damaged skin moist, and I still use Cetaphil cleanser and moisturizer when caring for my skin and hair (I find it very easy to use). I also use non-latex gloves when caring for my skin.

Both non-stick and regular pads come in various sizes and are easy on the skin. Gentle wrap bandages are also very easy to wear and they do not stick to skin or hair. Many product lines provide sensitive skin bandages and pads that are pain-free when removing. Gauze bandaging can help keep pads in place, and elastic stretch netting can help keep bandages and gauze in place. Lastly, gentle tape is a great product that adheres well to skin and removes easily. Make sure you review exactly how to use these and any products when caring for your skin–including how often to check and change your dressings–with your health care provider. I found it helpful to write down all instructions, medications, and medical products. I quickly learned which products worked well and whether to purchase them locally at a store, pharmacy, or online. I established a positive and team-focused relationship with three local pharmacies where I ordered my medications and care products.

Dental

I continue to work with my dentist, dental hygienist, and oral surgeon to manage my oral hygiene. I receive dental cleanings every four months instead of the typical six months from my dental hygienist per my oral surgeon’s guidance. I use soft children’s brushes to brush my teeth, soft dental floss, and a product called Biotene, which comes in various flavors. I gently brush my teeth after meals and floss once daily. I carry my dental products, medications, and any dressing products in a lunch bag; it’s very easy to carry, and it keeps all of my medical needs handy and discreet.

Clothing

Like many P/P patients, I was misdiagnosed for months. As a result, a lot of my clothes were ruined. After I was diagnosed, the combination of added weight from various medications and dressings made wearing clothes hot and very uncomfortable. Wearing business clothes, slacks, skirts, sweaters, hose, blouses, and jeans made my skin hurt and itch even more! I found it helpful to wear lightweight, dark-colored athletic clothing with cooling wick technology. I wore dark colors because topical steroids stain and are very difficult to remove.

Over time my style changed to lightweight pullover athletic shorts, pullover short-sleeve shirts, large light long-sleeve shirts, athletic pants (no sweats or yoga pants), cotton underwear, and socks. I avoided button-down shirts, rings, watches, or jewelry. I made sure to wear hats and light coats and mittens outside. I learned that if my clothes let me breathe, felt cool and light–I had something to work with. I found wearing soft athletic sneakers and slippers worked best for me instead of shoes. We also kept our home cool, and I avoided exposure to heat or bright sunlight for extended periods of time.

Lifestyle

My family and I developed a schedule after guidance from my medical team. We set up a cabinet in the bathroom that contained all of my medications, dressings, and medical supplies. My schedule included checking any areas of damaged skin (wound check), showering with lukewarm water and Cetaphil, changing dressings, and then changing into comfortable clothes. After this, I did another wound check on my mouth. I then gently washed my mouth out with cool water and brushed with Biotene using a soft children’s toothbrush. I found using a product called “magic mouth” helped greatly with my painful mouth sores. (This product can only be purchased with a prescription.)

I worked with a dietician to identify foods that both met my nutritional needs and kept me from gaining weight due to little activity and medication. My diet consisted of various soups, broths, frozen pops, and cooked soft foods. This helped a great deal, and I soon developed a menu. I took any medications by schedule and kept busy reading, watching TV and movies, doing word puzzles, art therapy, doing laundry, going on short walks, and following golf. Golf is a passion of mine, and it really helped divert my attention. Our church helped with visits, meals, and exploring my faith. I used meditation, stress relaxation, gentle yoga, calming music, and began seeing a licensed therapist. We also engaged with the International Pemphigus and Pemphigoid Foundation (IPPF), and they were the greatest help. I highly recommend that all new patients check out the IPPF’s Facebook page, Twitter account, website, and other amazing resources.

Sleep

I tried to stay busy throughout the day while I was at home. Certain medications like steroids can play havoc on your sleep schedule. I worked with my doctor to identify medications that helped with itching, sleep, depression, anxiety, and mood swings. I found that taking my oral steroid medications early in the morning didn’t impact me as much at night during bedtime. Additionally, it also worked for me to take a low-dose oral antihistamine (Benadryl) twice a day.

I found that sleeping on a couch with light sheets and soft pillows helped me stay in a supported sleep position, which prevented me from rolling around all night and damaging my dressings. If I couldn’t sleep, I had a list of activities to do while not waking up my family. I also had medication if I couldn’t sleep or got too itchy. I recommend keeping your house (or at least a room where you spend your time in) cool, quiet, and filled with various activities like TV, movies, and books. This may be helpful during bedtime, and also relaxing on a bad day when a distraction is needed.

Work

I used the Family Medical Leave Act (FMLA) to take time off from work. I stayed in constant contact with my employer, and as a result they were very supportive. I was able to return back to work several weeks later part-time, and then full-time. This was a decision that I made with my family and entire care team.

Time

Over time, the long hours of wound care, special menus, dental care, sleepless nights, and meltdowns lessened since my diagnosis in February of 2016. Somewhere in the process, I learned what worked, developed new ways of coping and managing, and utilized resources. My family and I are very well-informed about bullous pemphigoid (BP), and we’re a part of the IPPF community. We’re not only living with BP–we’re thriving.

Pemphigoid Gestationis is a rare autoimmune blistering skin disorder that affects an estimated 1 in 40,000-50,000 pregnancies in the United States each year. United Kingdom figures put it at 1 in 1-2 million people. You could say that each of us is one in a million! No one wants this; most have said that they wouldn’t wish it on their worst enemy. This is my PG story.

May 10, 2013 was the first time I had heard of pemphigoid gestationis (or gestational pemphigoid, as my doctors all called it). I was nine days postpartum with my first miracle son. The pregnancy had been a struggle with my doctors who had advised me to abort him at 17 weeks and to not get pregnant again, as I would “never be able to carry a baby to viability.” When my son was born at 38 weeks gestation by emergency C-section because his heart kept stopping with contractions 16 hours into labor, he came out crying. My husband and I, understandably, breathed a huge sigh of relief. My next thought was, “It’s over; I can just be a normal mom.” Sadly, that wasn’t to be, either.

I tried to ignore the itch as much as possible, but it just seemed to be getting stronger and more widespread.

Within 36 hours of the birth, my palms were itching, and there were little, red bumps all over them. I asked every nurse or doctor that came in my room about it. One nurse told me that it was probably because I was allergic to lanolin, as I am allergic to wool. I stopped using the lanolin. It didn’t help. Everyone else just ignored me or said, “You are allergic to something here at the hospital, it’ll go away when you go home.” Once home, I almost immediately took a shower, hoping to wash away whatever it was that was bothering me. That didn’t happen.

On Sunday, we were trying to get used to having a newborn at home. I tried to ignore the itch as much as possible, but it just seemed to be getting stronger and more widespread.

On Monday, blisters started to form on my hands and thighs and in my belly button. I stopped taking pain medication, the only new thing that remained from the surgery and hospital. While my pain increased slightly and my ability to move became slightly less, the rash showed no signs of easing.

On Tuesday, I called my obstetrician. Her nurse told me to go to the emergency room. I was unwilling to drive the hour and twenty minutes to the larger city hospital where I had delivered my son. So, leaving him at home with my mother who had come to stay with us to help out, I went to our small, rural ER, where I was told, “It looks like an allergic reaction.” They gave me a steroid shot and sent me on my way.

As he was walking out of the room, he told me that I should probably stop breastfeeding my son because of the high dosage of prednisone he was prescribing.

On Wednesday, I tried to tough it out, hoping that the steroid shot would help my immune system get the rash under control. Thursday morning, my newborn had his first appointment with Dr. Julie Rosa, a family medicine doctor at the local clinic attached to the hospital. She checked him over, declared him healthy, and then turned and asked what was going on with me. I told her what everyone had told me. “I guess it’s an allergic reaction, but I don’t know what to do.” After asking a few more questions, such as when it had started, where it had started, if it itched or hurt, etc. she drew around a few of the blisters, gave me a prescription for an antibiotic to ward off infection from all of the open wounds, and instructed me to come back during open clinic hours the next morning.

I did as I was told, and after signing myself in, the receptionist, using a tissue, picked up the pen I had used and threw it in the garbage. In the waiting room, I was stared at and asked, repeatedly, “What’s wrong with you?” Once in a room, three doctors from the clinic stood around looking at their smartphones, a textbook, and me. One of the doctors wrote down their consensus diagnosis: gestational pemphigoid. Doctor Julie then jumped into action, calling dermatologists in the general area, trying to find me an appointment for that day so I didn’t have to suffer through the weekend. She found a dermatologist’s office that was nearly 2 hours away and would close in about 2 hours and 15 minutes. The doctor didn’t have an appointment open, but his physician’s assistant agreed to see me. We hurried out, stopped at the house for snacks, frozen breast milk and some more diapers, and headed down to the new doctor’s office. We got there with a few minutes to spare, and I was an emotional mess. This receptionist kindly took my hand in hers and said, “We will get this figured out, and we will get you better.” I needed that reassurance.

The dermatologist stepped into the room for a moment after the PA had taken down all the pertinent information from me, took one look at me, and said, “Yes, definitely Gestational Pemphigoid.” He instructed the PA to do the biopsies to confirm and told her which medications and dosages to prescribe. As he was walking out of the room, he told me that I should probably stop breastfeeding my son because of the high dosage of prednisone he was prescribing.

I left the office that day hopeful and crushed. Breastfeeding, while not going flawlessly, was working; it felt like this was the only part of childbearing that my body was actually allowing. As I struggled in the back seat of my car with a nipple shield, a nursing cover, a crying, wiggly newborn, and my own emotions, tears slipped down my face uncontrollably. Indeed, over my four months on prednisone while postpartum, the vast majority of times that I lost it were over breastfeeding or pumping. This is common for new moms, but prednisone definitely doesn’t help those postpartum (or pregnancy-related) hormone fluctuations! I decided to seek other opinions before stopping, and I am glad I did. I was working as a pharmacy technician at the time and had access to multiple pharmacists. In addition, I sought Dr. Julie’s advice, who now oversaw both my son’s and my own primary care. All of them concluded that the benefits outweighed the risks, even those for whom it would have been easier to say, “no, stop,” since that would mean I wouldn’t have to pump when I returned to work. I ended up pumping and dumping while taking a split dose of 80mg a day (40/40), but resumed once I was able to take prednisone just once a day. In PG literature, it suggests that breastfeeding is helpful for resolution of the active disease. In my interactions with over 350 PG patients in the Facebook group for PG that I help administer, I would say most of us breastfed for at least a couple of months.

It took four months to taper off prednisone completely, and I have not had to go back on it. That is not to say I have not had any symptoms of PG. Like many PG ladies, I had monthly, localized “mini-flares” that coincided with my menstrual cycle; most of the time these do not require oral medication. Ironically, they stopped when I got pregnant again with our second child, also a boy, who despite the reported 90% recurrence rate in the literature, was indeed a skip pregnancy. In our group, which has many more respondents to this question than the largest PG published study (87), our numbers run at about a 65% recurrence rate with another 15% not needing oral medication to manage the flare.

“We will get this figured out, and we will get you better.” I needed that reassurance.

Because I didn’t have active PG while pregnant, I didn’t have to worry about the effects of PG on my sons in utero. However, that is not the case for many women. A PG pregnancy is a high-risk pregnancy. According to studies, the most common effects of PG on the unborn child are preterm birth (usually at least 35 weeks), intrauterine growth restriction, and placental failure late in the pregnancy. The duration of the disease affects this the most; i.e. if its onset was in the first or second trimester, as opposed to the third. Although the miscarriage/stillbirth rate is the same in PG pregnancies as in the general population, it is important to have close monitoring of the baby through ultrasound and non-stress tests, especially late in the pregnancy, to ensure that the baby is doing well. Prednisone use during the pregnancy can also lead to gestational diabetes and preeclampsia and/or eclampsia, which pose other challenges. Also, about 3% of PG babies are born with a mild rash, which usually resolves on its own in a few days and does not seem to bother the babies at all.

Despite doctors’ and researchers’ claims that there is no need to study this disease because it only affects pregnancy, which is preventable, there are long-term effects on PG patients. As previously mentioned, many women get monthly reminders with their cycles. Birth control options are limited because the use of combination hormonal birth control can frequently cause flares. As with all autoimmune diseases, the likelihood of developing others increases. For PG patients, the most common are Graves’ disease and Hashimoto’s disease, both of which are thyroid-related.

If you are or have suffered from pemphigoid gestationis, help and support is available on Facebook at https://www.facebook.com/groups/PemGest. If you are a caregiver for someone with PG https://www.facebook.com/Pemphigoidgestationis/ is a community page with links to studies, as well as a place to ask questions. Of course, the IPPF is also willing and able to answer questions as well.

Did you know that more than $10 billion in employer matching of charitable donations goes unclaimed each year? Employers typically match their employees’ donations up to a certain dollar amount per employee per year. All funds not utilized by employees by the end of the calendar year are never distributed to charities.

Matching donation programs are a large part of corporations’ social responsibility initiatives. According to GreatNonprofits.org, many corporate employees do not know that their employer will match their charitable donations. As a result, billions of dollars that can go to deserving nonprofits toward vital social programs are never distributed. Workplace giving programs are responsible for about $5 billion in charitable giving each year, but greater awareness could lead to at least a tripling of that figure. Each year, the IPPF receives a handful of company-matched donations. Of the 623 donations received in 2015, 12 donations (or 1.9%) were matched by employers for an additional $1,250. Imagine if that number were 5%, 10% … or even a lofty 25%?

To help our donor community maximize their gifts, the IPPF has added the ability to search and see if your employer has a matching donation program through DonateDouble.com. To see if your employer has a matching donation program, check the box next to “Would you like your employer to match?” Find your employer in the list and enter your work email address. That’s it! DonateDouble is an end-to-end employer matching service. By actively managing the match process, DonateDouble minimizes work donors are typically asked to complete by their employer. For example, when required by companies, DonateDouble auto-fills match forms and sends them to donors for e-signature. This also minimizes the effort for the IPPF by organizing and driving the match process on our behalf.

When you make your next donation, please “Check the Box” and see if your employer is on the list. You can also contact your HR department for assistance. If you have any questions, feel free to call the office and speak to Monique, Noelle, or myself. You can also email us at info@pemphigus.org.

Thank you and let’s “Check the Box” in 2016 to maximize every dollar donated!

We have a day for giving thanks. We have two for getting deals (Black Friday and Cyber Monday). Now, there’s #GivingTuesday, a global day for giving back. On Tuesday, December 1, 2015, nonprofits, families, businesses, and everyday people around the world will come together for one common purpose: to celebrate generosity and to give. #GivingTuesday leverages the power of social media and the generosity of human nature to bring about real change by encouraging and amplifying small acts of kindness.

You donate, share on your social media outlets, someone else donates, and the cycle repeats all day long.

It’s a simple idea and it’s easy to join in. Here’s how #GivingTuesday works:

On December 1, tell your story on Facebook, Instagram, and Twitter about why you contribute to the IPPF and how your friends and followers can too. You donate, share on your social media outlets, someone else donates, and the cycle repeats all day long. It’s important that day to use the hashtags #GivingTuesday #healourskin and #putitonyourradar so that we generate a groundswell of support and awareness for the IPPF.

Why is the IPPF participating this year? Because we’re ready to make this one-day event a success. The IPPF’s social media presence has skyrocketed thanks to: the hard work of Noelle Madsen (IPPF Patient Services Coordinator); the regular Facebook and Twitter activity of our Peer Health Coaches (March Yale, Mei Ling Moore, and Jack Sherman); the growing footprint of our Awareness Campaign; and last, but certainly not least, the participation of our P/P Community.

Last year, #GivingTuesday raised more than $53 million for nonprofits around the world. That proves the explosive power of social media sharing (liking, sharing, retweeting, etc.).

I ask you to remember the IPPF on December 1, 2015, and be a part of #GivingTuesday. Remember to use the hashtags #GivingTuesday #healourskin #putitonyourradar to help us keep track of our community’s efforts.

The IPPF has maintained a “News and Information” section for many years. The launch of PemPress signals a new era in how we share information with our community. Our overarching goal is to increase public knowledge of the IPPF and our programs and services while providing P/P patients with information that improves their quality of life.

Our PemPress operational goals are to build and strengthen the IPPF brand by increasing visitors to our website; convert those visitors into donors, volunteers, ambassadors, and advocates; and increase the IPPF presence on social media channels. Each week, a new article will be posted in one of four categories: advocacy, awareness, education, or foundation. This monthly rotation will ensure we are keeping our community up to date on ways to help the IPPF and themselves.

Week 1: Foundation
Week 2: Patient Support
Week 3: Awareness
Week 4: Advocacy
Week 5 (if there is one): To be determined.

This is no small task and takes many people behind the scenes to research, write, and edit content. It would not be possible without the support of the IPPF staff and volunteer section editors. To provide even more informational, educational, and rich content, we have guest contributors who will focus on specific areas of interest to our community. These folks are with specialty pharmacies, P/P treating physicians, global P/P experts, our staff, volunteers, and patients, caregivers, and family members.

If you would like to be featured as a guest contributor, have a suggestion on PemPress, or a future story, contact the PemPress team at pempress@pemphigus.org.

I recently spoke with a patient who stated that his marriage was under a great deal of strain – which is highly understandable as the significant others of patients are the caregivers and are often in the line of fire, so to speak.

This was not the first time a wife or husband had confided this to me. Helplessness can cause patients and/or their caregivers great despair – to which wanting to run away is an understandable reaction.

Patients experience pain, embarrassment, and uncertainty when afflicted with P/P or other rare diseases.

The caregivers can empathize, the caregivers cannot truly feel what the patients are experiencing.

Everyone who is a caregiver tries his or her best to be supportive. Every patient who is undergoing this challenge is bound to be depressed and scared at times. Every family member may feel helpless most of the time.

This is the time to reach out and ask for guidance. Finding support groups is easier these days due to social media. Pemphigus Vulgaris is only one of 7,000 rare diseases that exist today and there are sources of information for each one of them. Search the Internet and contact local support groups. Check out the link given here for caregivers (It’s one of the very best!).

http://www.caregiveraction.org/

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