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Our sixth story in the Patient Journey Series comes from Toby:

When I was diagnosed with pemphigus vulgaris (PV) in late 2010, like most patients I’d never heard of the disease. Also, like most, I’d endured about six months of worsening symptoms before finding a doctor who was able to help me. After starting me on medication, the next thing my dermatologist did was to tell me about the IPPF. He encouraged me to reach out to them if I needed support, but I shelved the idea for a long time because I was sure I could manage by myself. I had the mistaken idea that if I followed my doctor’s instructions, I would “get better,”and soon.

Having PV was a wake-up call for me, however, as the disease proved to be tenacious, unpredictable, and unmanageable in my case on prednisone and CellCept alone. I embarked on a series of rituximab infusions ⎯ four over the past eight years ⎯ which have helped to control my symptoms. But the most important part of that wake-up call was the realization that I couldn’t go it alone. I called the IPPF nearly a year after diagnosis and talked to a Peer Health Coach, and the cloud lifted right away. For a while I attended support group meetings in the New York area. It was good to meet others who were facing the same challenges I was.

When I moved to New Hampshire three years later, I researched dermatologists to find one who was familiar with PV. Lo and behold, one turned up at UVM Medical Center in Burlington, VT, who had worked with IPPF Medical Advisory Board Member Dr. Victoria Werth at the University of Pennsylvania and co-authored an article on blistering diseases. I emailed Dr. Werth and asked her if she recommended this doctor, and she sent a thoughtful, encouraging response. I remained under the care of that doctor for five years until this year, when I moved to North Carolina.

This was a lucky move in many ways. Last October I attended the IPPF annual conference in Raleigh, NC, co-hosted by Dr. Donna Culton at UNC’s School of Medicine, and she was incredibly knowledgeable and inspiring. Because the IPPF set up the conference to make it easy for patients, staff, and physicians to mix, I was able to have one-on-one conversations with anyone I liked. There were cocktail hours, meals, and time between presentations, and everyone was approachable. I sought out Dr. Culton to say hello and chat with her. Afterwards, I told my daughter Kate, who lives in the area and had attended the conference with me, that I could do worse than moving down to NC and having Dr. Culton as my dermatologist. Then I made it happen. Two weeks before I packed up my car and drove the 800 miles with my cat to my new home, I had an appointment with Dr. Culton on the calendar!

Having excellent care and support (and even an infusion center) right here in my neighborhood gives me a sense of security and well-being, and I can trace that support directly back to the IPPF, who helped me find the way. Thank you, IPPF!

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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.


Check out the rest of the Patient Journey Series:


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.

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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:


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 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: