Events

Our fifth story in the Patient Journey Series comes from Fred Wish:

It was January 2007, and I was sitting across the desk from the second dermatologist I had seen in five months. For the second time, I was told that my condition was probably “seborrheic something-or-other” and was prescribed an alcohol-based topical steroid that I knew would be painful to apply. I had endured three months of increasingly widespread lesions on my scalp and back, but hadn’t associated those with the bad mouth sores and sloughing of my gums that started the previous summer.

The following week, I was scheduled for a tooth cleaning that I’d put off because I was afraid it would hurt. The poor dental hygienist probably never had performed such a bloody cleaning. When the dentist inspected my mouth, he immediately scheduled me for a biopsy. The result came back positive for pemphigus vulgaris (PV). Lucky me.

Actually, I was lucky—I lived within a short train ride of Manhattan and Langone Health at New York University (NYU), which meant I had access to medical professionals with extensive experience with PV. Even luckier, in early March of 2007 I came under the care of Dr. Jean-Claude Bystryn, one of the world’s premier pemphigus experts. Dr. Bystryn treated me until shortly before his death in 2010.

I was diagnosed with PV, was the patient of a top medical professional, had begun to manage my disease with corticosteroids, and had an extraordinarily supportive caregiver in my wife. I wasn’t even aware at the time that I was missing a crucial part of what I needed in my battle with my disease: I didn’t have the slightest clue about how to live with PV day-to-day.

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That’s when the IPPF came into the picture. Much of my career was spent associated in one way or another with the medical profession, which has perhaps made locating and comprehending detailed information about causes, treatments, side effects, insurance issues, etc., a bit easier for me than for some patients. My internet searches had turned up a ton of technical information and research papers about autoimmune blistering diseases, but not much about what it’s like to work, play, travel, or simply get out to a decent restaurant while dealing with stares and questions (and some well-intended but really bad advice) from friends and strangers. I felt alone. I knew there must be others out there who were struggling like I was, but until I found the IPPF website, I didn’t know how to connect with them. From my first tentative emails with Mei Ling Moore and Marc Yale, I knew: there were people who understood.

Of course, the IPPF website itself contains much information about the various forms of pemphigus and pemphigoid (P/P) as well as the services the IPPF provides. However, it has been the interaction with fellow patients through the peer health coaches, support groups, and the annual Patient Education Conferences, that have proven the most valuable to me. My work schedule kept me from attending a Patient Education Conference until 2014, when I traveled to Chicago and was able to meet so many people I had already encountered either through the IPPF website or various social media outlets. It was in Chicago that I learned of the potential of rituximab as a treatment option and attended meetings on topics such as relaxation techniques, dietary considerations, and the Awareness Ambassador Program (the outreach effort the IPPF put together to reduce the time gap between first symptoms and diagnosis). Just spending time with people who knew exactly what I was going through, who knew the instantaneous fear and rage that goes along with each new lesion, who were discovering how to find the shady spots at high noon, was an amazing comfort.

In Chicago, I not only signed on to help with the Awareness Program, but I also joined the Patient Registry, which has now been succeeded by the Natural History Study. Since then, I’ve attended Patient Education Conferences in New York (including a very chilly Mets-Yankees game!), Newport Beach, and Durham (where I re-established old friendships and met newer members of the P/P community). I’ve also met with members of my local support group; volunteered to help staff the IPPF booth at the Greater New York Dental Meeting in 2017 and 2018; provided P/P information to dozens of local dentists; and most recently advocated for the IPPF and supported legislation as part of Rare Disease Week on Capitol Hill.

I’m not writing all this to tell you what a good guy and solid citizen I am. I’m not a “joiner” by nature, and it surprises me that I’ve become involved as much as I have. The IPPF has provided such a solid foundation of support, both practical and intangible, to me over the years that I truly feel a part of the family. That’s what has instilled in me the impulse to roll up my sleeves and help out.

My PV has been in remission (no flares and no medication) for more than three years, but the IPPF continues to be an important part of my life. The Patient Education Series webinars help keep me up-to-date, and I look forward to each new issue of the Quarterly. I have already set aside time for the Patient Education Conference in Philadelphia this October.

Dealing with this ugly group of diseases is nothing any of us would have chosen. Make no mistake: I wish there wasn’t a need for this organization. I wish it had never been necessary to meet the patients, caregivers, and staff I’ve come to love and admire and whose friendship and commitment mean so much to me. But I am grateful every single day for having the opportunity to share this journey with them.

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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:

Our fourth story in the Patient Journey Series comes from Dr. Kathleena D’Anna:

When I was first diagnosed with pemphigus vulgaris (PV), I didn’t have the slightest clue what those strange words meant or how this disease would impact my life. The physician who finally diagnosed me handed me a description of the disease and referred me to another doctor, an expert in PV management.

In the meantime, I waited nearly three months to see a specialist, armed with only a vague report on the medically and statistically significant features of PV. I felt alone and confused, feelings only amplified by descriptions that didn’t relate to me at all—I wasn’t even half the age of the individuals typically affected! I had so many questions. What if they got the diagnosis wrong? What could I eat to help heal the sores? What could I do besides take a handful of pills every day?

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It was during one of my many internet searches that I came across the IPPF. I couldn’t believe that there was an entire organization dedicated to patient information, and I immediately took advantage of connecting with a peer health coach (PHC). My PHC for the first person to actually tell me, “It’s okay to be scared, everything is going to be okay.” I will never forget those words. They were the reassurance I had been missing and desperately needed. From there I began to realize that I wasn’t alone, that I didn’t need to figure everything out on my own. There were other people who had been through similar experiences to help guide me through this journey.

As I engaged more within the IPPF community, I realized how important and therapeutic it was to share my personal experiences living with PV. Prior to attending Rare Disease Day with the IPPF, I had never told anyone except my close family that I had an autoimmune disease. I hid it away like a dirty secret because I was afraid of appearing weak or being treated differently. Especially as a student of medicine—we are supposed to treat patients, not be them.

When I finally met the members of the IPPF in person—the individuals whose stories I’d read and advice had given me confidence—I decided that I was done denying that part of myself. I am a doctor and a patient. Having PV has made me the person I am today. Rather than being a weakness, it has given me the strength to be wiser and more empathetic. I will use what I’ve learned to teach others, share what I can in both the patient and the medical communities, continue to raise awareness of PV, and elicit change in how people view medical conditions.

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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:

Patient Journey: Diagnosis

Welcome to our new story series focusing on the patient journey.

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.

Every week for the next eight weeks, we’re going to highlight a story that focuses on a specific part of the patient journey. OUR HOPE is that by sharing stories from our community, more patients and caregivers will realize that they are not alone.

Our first story in the Patient Journey Series comes in the form of a letter from Halima:

My symptoms started at the beginning of April 2018. My mouth was inflamed, and I had painful blisters on both sides that made it very difficult to eat or drink. I had no idea what was causing my symptoms, and I went to four different doctors. My primary care doctor told me that I needed to see an ENT specialist. The ENT specialist prescribed prednisone, but it didn’t work. I was told to see a rheumatologist, and they also prescribed prednisone. When that didn’t work, I was referred to an oral surgeon. The oral surgeon performed a biopsy, and I was diagnosed with mucous membrane pemphigoid (MMP).

I wasn’t sure what MMP was and which doctors were able to treat it. I researched and found out that I needed to see a dermatologist. I called at least eight dermatologists in my area, but they did not treat MMP. Some didn’t even know what it was. With my daughter’s help, we found the IPPF online, and I reached out to Becky Strong via email. Becky shared Dr. Ron Feldman’s (Emory University) information with me, and she reached out to him about my case. She followed up with Dr. Feldman and me to see how my treatment was coming along.

Dr. Feldman genuinely cares about his patients. It took almost a year before I was diagnosed, but with the right medications and care, I am on the road to recovery. I wish more doctors were aware of MMP; it would have helped me to receive care earlier.

I am very thankful to the IPPF for their help!

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Your donation helps patients like Halima get quicker access to the care so they can recover—and thrive—with pemphigus and pemphigoid.

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Last year was shaping up to be a very important year. I had just gotten an associate degree in journalism and was all set to transfer to a four-year university in the fall to pursue my B.A. On top of that, I turned 21 in February and was looking forward to savoring all the exciting things young adulthood had to offer. It was during this very same month that everything changed.

I noticed a few innocent-looking blisters on my nose that were fragile to the touch. Although this was something I had never experienced before, I thought nothing of it and waited for the broken skin to heal on its own. It never did. The following weeks showed a worsening of my then-unknown condition: the taste of blood and large blotches of red in the sink were always present after brushing my teeth, the open sores on my face had multiplied to startling numbers, and the skin on the rest of my body threatened to tear away with any slight use of force or friction.

By the time May came around, I was living a horror film. Mornings began with my skin peeling away at the slightest touch and my clothes sticking to the popped blisters that covered my body.

By this point, I had seen my dentist and three different dermatologists, none of whom could provide me with a direct answer as to what exactly was wrong with me. The dentist blamed my symptoms on neglectful hygienic practices, and the others deemed it as an aggressive form of acne before prescribing me various ointments and creams to slather on my face. Weeks of waiting to see improvement turned into months, and the sores that started on my face were also manifesting on my chest and back. My appointments with the dermatologist were beginning to feel like an episode of The Twilight Zone–while exposing me to different kinds of light therapy and promising no results, no one was able to fully respond to my questions. But they were always willing to prescribe more pharmaceuticals.

By the time May came around, I was living a horror film. Mornings began with my skin peeling away at the slightest touch and my clothes sticking to the popped blisters that covered my body. My days were plagued by the excruciating pain of exposed flesh, my wavering faith for recovery, and the growing fear of the unknown. When it was time to sleep, I dreaded waking up to see what new bodily wound awaited me in the morning. I began to think, “Will I ever be the same again?”

I had decided that instead of waiting around for empty promises to be fulfilled, I needed results. Taking matters into our own hands, my mother and I researched my symptoms and visited a contagious disease specialist. Still clueless as to what ailment was literally tearing me apart all those months, I had come to believe it was something I caught from an outside source.

When the specialist analyzed my skin biopsy, he told me what I had was not an infection but an autoimmune disorder called pemphigus vulgaris.

. . . you know your body better than anyone else.

Only producing 1-10 new cases per 1 million people worldwide each year, pemphigus vulgaris is a very rare autoimmune disorder that causes the body to mistakenly attack itself, forming painful blistering lesions on the skin and inside the mouth. While there is currently no cure for this condition, there have been many cases of remission brought on by the use of immunosuppressive drugs and IV therapy.

Initially, I was shocked when I found out it wasn’t a foreign bacteria or severe allergic reaction that was ravaging my skin–it was my own body turning against me. This surprising diagnosis has taught me to never take my health for granted, and even though I have improved significantly since that fateful day in May, I am still on the mend and learning to cope with the healing process of my condition.

Through this long journey, I have learned valuable lessons regarding myself and what truly matters in life. Whether you have a blistering autoimmune disorder or any other visibly noticeable condition, it does not matter what other people think of your appearance. They will never know the challenges you’ve faced and the battles you’ve won. The best part is knowing that you have survived through it all and become stronger because of all those times of hardship.

Without a doubt, some days will be better than others, but when you feel you are being overpowered by those negative emotions, remember to surround yourself with love. I am immensely grateful for the support and care my loved ones have shown me, especially my parents, who have been by my side at every doctor’s appointment from here in the Coachella Valley all the way to San Bernardino. They are the light that still shines on my darkest moments. Even if it’s a hobby or a friend to talk to, find what gives you joy and hold onto that feeling. Happiness is the strongest medicine, and you deserve to feel your best even when your situation may not be.

Finally, the most important lesson that I’ve learned is that you know your body better than anyone else. If you should encounter a physician that does not satisfy your concerns or answer important questions you have, do not settle; seek the help you need until you find a doctor you feel confident will listen to you. I spent months misdiagnosed and being treated as though my observations and concerns weren’t relevant. When you know something is deeply wrong, you should always have the full support of a physician who has your best interests in mind.

Sometimes life can throw the most unexpected challenges at us, but we must carry on with the comfort that there will be better days ahead. Despite being confined to my home a majority of the year, I am currently attending college at the Cal State San Bernardino campus in Palm Desert with no intention of letting my condition get the best of me. My body may be at war with itself, but I know I’ll come out victorious in the end.

This article first appeared on the Undiagnosed Diseases Network (UDN). The UDN is a research study that is funded by the National Institutes of Health Common Fund . Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies. The Coordinating Center of the UDN is based at the Department of Biomedical Informatics at Harvard Medical School. For more information on the Undiagnosed Disease Network, visit https://undiagnosed.hms.harvard.edu.

Pemphigus and pemphigoid (P/P) are rare, autoimmune blistering diseases that affect the skin and mucous membranes, causing lesions that do not heal. Like many suffering from a rare disorder, the diagnostic journey for a P/P patient is complicated and stressful. On average, this journey involves five different doctors over a period of ten months before a patient receives a correct diagnosis. (Source: pemphig.us/diagnostic-data ) Once a correct diagnosis is received, P/P patients begin the long process of managing disease activity. There is no cure for P/P. Many patients are able to achieve a state of remission; however, insurance regulations make it difficult for some patients to receive the most effective treatments.

Sharon Williamson’s journey to a pemphigoid diagnosis started in July of 2014 when her mouth began to bleed whenever she brushed her teeth. Like many undiagnosed P/P patients, Sharon first shared her symptoms with her dentist. This dentist did not recognize Sharon’s symptoms and told her to floss more frequently.

The next doctor Sharon saw was an ear, nose, and throat (ENT) specialist. The ENT doctor thought her bleeding was a reaction to Plaquenil, which Sharon was taking to combat her rheumatoid arthritis. The ENT doctor put her on a mouthwash containing lidocaine. This numbed her mouth, but did not help the bleeding.

Sharon then saw her rheumatologist. She had been wondering if her bleeding gums and cheeks could be symptoms of Sjogren’s disease, which often affects arthritis patients. The test for Sjogren’s came back negative.

By December of 2014, Sharon was spitting bloody tissue whenever she brushed her teeth. “It hurt so bad that all I could do was hang over the sink and cry … spitting out blood the entire time,” she said. “No toothpaste was mild enough. No toothbrush was soft enough.”

From January to May of 2015, Sharon had more appointments with other doctors: an optometrist, who saw nothing wrong with her eyes, though Sharon would soon experience ocular burning; a dermatologist, who didn’t recognize her symptoms; and her primary care physician, who had no suggestions. “I felt as though my face was melting off,” she said.

After researching gum disease specialists, Sharon saw Dr. Jarrett Manning in Smyrna, GA, who recognized her symptoms as pemphigoid. Dr. Manning referred Sharon to Dr. Ronald Feldman, a dermatologist specializing in autoimmune diseases at Emory University. After biopsies and blood tests, Dr. Feldman diagnosed Sharon with mucous membrane pemphigoid (MMP)—a form of pemphigoid characterized by blistering lesions that primarily affects the various mucous membranes of the body, as well as the skin. Soon after, an eye specialist confirmed ocular involvement, which could lead to blindness. This was September of 2015, 14 months after Sharon’s initial symptoms.

Though Sharon found a doctor who was able to diagnose and treat her MMP, she has not yet achieved remission.

“I feel hopeless and fear the possibility of going blind,” Sharon said. “The pain from all of my conditions drains the energy from my body, making it hard to work. I go home, put warm compresses on my eyes, and lie in darkness for two hours. Eventually, I can get up and see my husband for a couple of hours before I go back to bed. Without the additional rest, I cannot do my job. I know that eventually, I will have to go on disability.”

Some emerging treatments, like intravenous administration of rituximab, have not been approved by the FDA for pemphigus and pemphigoid. This makes it difficult or impossible for patients to get approval for such treatments from medical insurance companies.

For Sharon, this has meant playing an anxious waiting game in hope that these treatments will be approved before her disease progresses even further. In fact, it was only during the writing of this post—in April of 2016—that Sharon’s infusions were finally approved by her insurance company after three previous denials and a call to her insurance commissioner.

“It’s sad that you can lose your livelihood, your sight, and maybe even your life, because of delays in… getting a diagnosis and treatment,” Sharon said.

What are Pemphigus and Pemphigoid
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