Events

Healing Heroes are the heart of our community. They go above and beyond to support the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid. Join Toby and become a Healing Hero today.

Do you remember being diagnosed?

That feeling of being alone with a rare disease?

Most newly diagnosed patients have never met another
person with pemphigus or pemphigoid (P/P).

That’s where IPPF Peer Coaches come in. 

An IPPF Peer Coach is often the first person a patient connects with who “gets it.” Here’s your chance to make sure that the Peer Coach program can continue.

A monthly gift of $30 or more allows IPPF Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with P/P. They help patients know that they’re not alone. 

Introducing Toby, a pemphigus patient . . . 

Toby became a Healing Hero determined to pay it forward so other patients don’t have to feel alone. Don’t miss her compelling story.

BECOME A HEALING HERO

Make a contribution like Toby did . . . 

Give what you can now! 

“I could not have gone it alone, and I want others to experience the same comfort and support I received. Help me pay it forward and fund the future by becoming a Healing Hero.”

Monthly Sustaining Gift Options

IMPROVE PATIENT ACCESS TO CARE ($15)
Your monthly gift of $15 allows us to screen and add a new medical professional to our Find a Doctor map, increasing patients’ access to care.

HELP THE NEWLY DIAGNOSED ($30)
Your monthly gift of $30 allows our Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with pemphigus and pemphigoid.

ACCELERATE DIAGNOSIS TIMES ($75)
Your monthly gift of $75 raises disease awareness by educating 75 medical professionals through our Biopsies Save Lives campaign. 

FUND ESSENTIAL RESEARCH ($100)
Your monthly gift of $100 helps us conduct the ongoing Natural History Study to better understand pemphigus and pemphigoid.

Become a Healing Hero

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

BECOME A HEALING HERO

Healing Heroes are the heart of our community. They go above and beyond to support the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid. Join Sally and become a Healing Hero today.

Make better patient “access to care” a reality.

Become a Healing Hero.

And start making a difference today.

Because pemphigus and pemphigoid are so rare, it can be difficult for patients to find doctors with experience in treating these diseases. Sally, a mucous membrane pemphigoid (MMP) patient, became a Healing Hero in 2017, shortly after being diagnosed. Her local doctors were unfamiliar with the disease, but luckily, she was able to find a local specialist through the IPPF’s Find a Doctor map.

“Without the IPPF, I don’t know what I would have done. But I do know that my treatment would have been tragically delayed. I highly encourage you to become a Healing Hero and pay it forward so that the IPPF is there for us as well as for those with pemphigus and pemphigoid around the world.” 

A monthly gift of $15 or more would make a tremendous difference, help patients like Sally, and allow us to screen and add new medical professionals to our Find a Doctor map, increasing patients’ access to care. 

BECOME A HEALING HERO

Monthly Sustaining Gift Options

IMPROVE PATIENT ACCESS TO CARE ($15)
Your monthly gift of $15 allows us to screen and add a new medical professional to our Find a Doctor map, increasing patients’ access to care.

HELP THE NEWLY DIAGNOSED ($30)
Your monthly gift of $30 allows our Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with pemphigus and pemphigoid.

ACCELERATE DIAGNOSIS TIMES ($75)
Your monthly gift of $75 raises disease awareness by educating 75 medical professionals through our Biopsies Save Lives campaign. 

FUND ESSENTIAL RESEARCH ($100)
Your monthly gift of $100 helps us conduct the ongoing Natural History Study to better understand pemphigus and pemphigoid.

Become a Healing Hero

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

BECOME A HEALING HERO

Healing Heroes are the heart of our community. They go above and beyond to support the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid. Join Dr. Donna Culton (University of North Carolina at Chapel Hill) and become a Healing Hero today.

Join the heart of our community and become a healing hero.

“I became a Healing Hero because I wanted to give back to the IPPF… Please join me in paying it forward by becoming a Healing Hero today.”

Monthly gifts allow us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.

BECOME A HEALING HERO

Monthly Sustaining Gift Options

IMPROVE PATIENT ACCESS TO CARE ($15)
Your monthly gift of $15 allows us to screen and add a new medical professional to our Find a Doctor map, increasing patients’ access to care.

HELP THE NEWLY DIAGNOSED ($30)
Your monthly gift of $30 allows our Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with pemphigus and pemphigoid.

ACCELERATE DIAGNOSIS TIMES ($75)
Your monthly gift of $75 raises disease awareness by educating 75 medical professionals through our Biopsies Save Lives campaign. 

FUND ESSENTIAL RESEARCH ($100)
Your monthly gift of $100 helps us conduct the ongoing Natural History Study to better understand pemphigus and pemphigoid.

Become a Healing Hero

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

BECOME A HEALING HERO

This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

Make an impact and unite our global community

Rob’s Story

If someone with a rare disease can consider themselves lucky, I am lucky to have found the IPPF and the annual Patient Education Conference only a few weeks after being diagnosed with pemphigus vulgaris (PV). The 2020 conference made a huge difference in my quality of life. The conference came at a critical point during my initial treatment and helped me understand my diagnosis and how to care for my mouth and skin. Most importantly, I heard from expert physicians about treatment options, including steroid sparing medications. The knowledge I gained from the conference allowed me to advocate for myself and make educated treatment decisions with my doctors.

I’ve continued to actively participate in the IPPF Patient Education Webinars. These webinars are an amazing opportunity to learn about PV and to pose questions to national experts. I even found my current dermatologist from one of these webinars. The webinars also cover important topics related to living with an autoimmune disease. The IPPF’s coverage of Covid and the updates provided on clinical research have been especially valuable. I also appreciate the advocacy that IPPF does on Capitol Hill for our conditions. Raising awareness with legislators and agencies, like the FDA, is critical for improving our lives and treatment options.

The IPPF has made a big difference in my life and managing my PV. I am grateful for the work it does, and I am proud to make donations to support this work.

Our mission is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join Rob and donate to the IPPF to help us ensure that our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

DONATE

This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

Maria Hernandez

Maria’s Story

“I connected with the IPPF in 2017 when I was diagnosed with pemphigus vulgaris (PV). After numerous doctor and ER visits, with no relief or answers, I connected with IPPF peer coach, Mei Ling Moore. She immediately emailed me, and personally called me to introduce herself and tell me about the IPPF. She guided me to the right doctors at UCSF, in San Francisco, CA. Mei Ling made herself available for any questions and concerns and followed up with me after my first appointment. I continue to stay in touch with any questions and update her with my continued progress. The IPPF has been very supportive through my journey to remission. I am forever grateful for this organization. They continue to help me and others to make our load a little lighter and to allow us to feel RARE, but not alone. Join me in giving back to others in our community, by donating to the IPPF community today.”

In 2022, we’ve helped 500 people navigate through the journey of living with pemphigus and pemphigoid through our Peer Coach program. Your tax-deductible donation ensures programs like this are available to all those who need them today, tomorrow, and for years to come. Join us to unite our global community, now through the end of the year.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

DONATE

This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

The IPPF is doing its best to give a voice to the pemphigus and pemphigoid community, in the U.S. and worldwide.

Mei Ling’s Story

Mei Ling was diagnosed with pemphigus vulgaris (PV) in 2002. She reached remission in 2012, the same year she started as an IPPF Peer Coach. In addition to this role, she organizes the Southern California Support Group meeting with Marc Yale.

When Mei Ling was asked how she started as a Peer Coach and what she wants the pemphigus and pemphigoid (P/P) community to know about the IPPF, Mei Ling said:

“I had just retired from my job at an architectural firm when I was asked by the Executive Director of the IPPF at the time, Will Zrnchik, if I would like to become a peer coach. He had noticed that at one of the IPPF Patient Education Conferences I attended, that I was very outgoing and I interacted well with the other patients. He also knew that I was very helpful at most of the Southern California support group meetings which Marc Yale organized. When he asked me, I was rather taken aback, because I didn’t think I was professional enough to join the organization, but he assured me otherwise. Janet Segall and Marc Yale were very helpful to me in learning how to effectively help patients who asked for assistance.”

“The IPPF is doing its best to give a voice to the pemphigus and pemphigoid community, in the United States, and worldwide. There are over 7,000 rare diseases that we know of, and more than 350 million people living with one worldwide, and few FDA approved treatments for P/P patients (as is the case with other rare diseases). The IPPF advocates for more research and awareness, and helps P/P patients everywhere through Patient Education webinars and by providing peer support through the Peer Coach program.”

Our goal at the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join us to unite our global community, now through the end of the year. Your tax-deductible donation ensures our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

DONATE

This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

Janet and the IPPF saved my life during an emergency flare by helping me find a doctor. -Lee Heins

Lee’s Story

I became symptomatic with pemphigus vulgaris October 31, 1994. This was the same month that Janet Segall founded the IPPF. Janet found me as a result of an introduction letter she sent to many Southern California dermatologists, and in particular, a Kaiser dermatologist friend of mine. 

Five months later, I attended the first Los Angeles Support Group Meeting. This was my first introduction to the amazing IPPF community. Five years later, Janet and the IPPF saved my life during an emergency flare by helping me find a doctor at USC Medical Center. My gratitude to the IPPF later led me to join the Board of Directors and serve as the Treasurer.

Please join me in supporting the IPPF. Family and friends may also make a donation in your honor by selecting the “dedication option.”

Our goal at the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join us to unite our global community, now through the end of the year. Your tax-deductible donation ensures our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

DONATE

This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

When I started the Foundation, my main focus was to connect with others and to help patients.

Janet Segall was diagnosed with pemphigus vulgaris in 1983. She founded the IPPF in 1994 with the goal of connecting others and helping patients. She continues to support patients as a Peer Coach, a role she has had for almost 10 years. “When you are diagnosed with such a rare disease as pemphigus and pemphigoid, one of the most difficult things is to find others to relate to. It makes you feel alone, like you’re the only one with the disease. A Peer Coach can help someone in so many ways. As a Peer Coach, I get to help patients understand their disease and their feelings. A Peer Coach has been there, so they can be there for both patients and their support system.”

When she was asked how people can get involved with the IPPF, Janet suggested:

“There are so many ways. You could volunteer your time, share your story, or participate in a clinical trial. However, sometimes volunteering isn’t possible so making a donation can have a huge impact. You could either make a one-time donation, or become a Healing Hero. Healing Heroes make monthly donations and help keep the IPPF alive to make sure we are always present for others who are diagnosed with these diseases.” 

Our goal at the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join us to unite our global community, now through the end of the year. Your tax-deductible donation ensures our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

DONATE

By Michael Rigas, Pharm.D.

Pass the Mic with Dr. Mike the Pharmicist

The first video in our new series, Pass the Mic with Dr. Mike, the Pharmacist is available.

Patients with Autoimmune Blistering Diseases (AIBD) may require multiple oral, topical, and intravenous drugs to obtain the best clinical outcomes. Obtaining this drug therapy requires the patient to interact with multiple physicians, pharmacists, pharmacies, drug wholesalers, and insurance companies. What is the pharmacists’ role in this process? 

In many respects, the pharmacist acts as the coordinator of this process since they function at the intersection of the physician’s prescription, the drug makers’ FDA-approved product, the drug wholesaler, the insurance company’s authorization and payment for the medication, and the patient, for whom all these actions are taken. 

Relative to the patient experience, the pharmacist’s main duties can be categorized into five main areas. Let’s discuss each separately to see how it impacts the patient’s experience and clinical outcome.

  1. Prescription processing: This is the main coordinating function the pharmacist manages for the patient. When the prescription is received (usually electronically nowadays), the pharmacist compares the drug ordered to the patient’s diagnosis, history, and physical to see that there is a match and that there are no major issues such as the patient’s allergies, the inventory in the pharmacy or the drug wholesaler at that time, the insurance companies formulary and approved diagnosis that would allow coverage for the drug for the patient that is for their disease. The pharmacist also verifies what the patient’s coverage would be and what the patient’s out-of-pocket costs would be, and verifies that the prescriber is licensed to prescribe in the patient’s state of residence. They also check to verify that the physician is not on any state or federal list of prescribers who are barred from prescribing for many reasons. Finally, the pharmacist tabulates the time needed to accomplish all of these events to assure the availability of the drug and how rapidly the patient needs the drug to match. 

In some instances, for oral generic drugs, this whole process may be accomplished in 15 minutes or less. But, in other more complex cases that involve costly oral, topical, or intravenous medications, this process may take days or weeks. This may depend on the availability of the drug, the possible need for more patient clinical data to be submitted, additional laboratory testing, etc., that may be required to obtain authorization for the ordered therapy from the insurance company. This protracted process may involve written appeals by the physician/pharmacy or a telephone consultation with the prescribing doctor and the insurance company’s doctors. 

  1. Patient support and safety: During the many steps in the above process, the pharmacist analyzes multiple issues and data points to assure that the likelihood of clinical, temporal, logistical, and financial harm to the patient is minimized. This may involve checking for allergic responses to ordered medications based on their history, or checking to see that the time needed to complete the above process is consistent with the acuity of the patient’s needs and other planned activities ( i.e., other medical procedures or tests, vacations, etc.), and that the out-of-pocket costs that the patient will be facing as a result of the ordered medications are minimized. 
  1. Patient education: This is an important function where the pharmacist compiles information from various sources and shares with the patient details about drug dosage and dose frequency, expected rapidity of drug effect, drug storage, expected drug side effects, and whom to call if an issue occurs. Education may also include issues surrounding home safety, fall prevention, and tips to better manage the other diseases the patient may have relative to the newly ordered drug therapy. 
  1. Billing and associated actions with the insurance company: One of the most important functions of the pharmacy and pharmacist is their “customer service” functions which mostly surround the insurance company’s billing on behalf of the patient and adjudicating the patient’s out-of-pocket costs. On the one hand, this function may be completely managed electronically in a few minutes for inexpensive oral medications. Alternatively, this function may take days or weeks for more expensive, infused medications. Interaction between the pharmacy, the payor, and the ordering physician is typically required initially, and maybe in an ongoing fashion if the authorization is denied and an appeal is needed, to obtain the payor’s authorization for payment. 

While this is happening, the pharmacist is evaluating the out-of-pocket exposure to the patient for the drug(s) ordered to see if there is anything clinically equivalent that is available that may result in a lesser out-of-pocket cost to the patient. Suppose there is a less costly, clinically equivalent product available. In that case, the pharmacist calls the ordering physician to discuss it with them, get the order changed, and then reaches out to the payor for authorization reflecting the new lowered out-of-pocket costs.

Finally, suppose the patient cannot afford their out-of-pocket costs. At the patient’s request, the pharmacy may explore drug company-based and non-profit foundation-based financial assistance programs for which the patient may qualify. The sum of these programs may make the drug affordable to the patient.

  1. Regulatory compliance: This is a complex concept. It ensures that all the data collected from each patient’s prescription processing and dispensing is properly collected, stored, and reported to the inquiring party. These parties include:
    1. The state board of pharmacy
    2. The patient’s insurance company
    3. Medicare
    4. Medicaid

The pharmacist must also assure that the prescriber is licensed to prescribe the exact products ordered in the patient’s state and is not on any lists of suspended or disbarred prescribers.  

These audits may be known and planned for or may be a surprise in nature. Poor performance in these audits may result in the pharmacy being sanctioned, removed from the payor contract, fined, or closed down. 

As you can see, there are a lot of actions behind the scenes that make the pharmacist a key player in the healthcare team. Pharmacists are extremely knowledgeable about the medications you have been prescribed and are traditionally underutilized by patients, and their role is often misunderstood. I hope this information has helped you better understand the pharmacist’s important role in your healthcare and well-being.  

Watch the video

Join us in uniting our global community today and every day. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

Giving Tuesday

Our goal at the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join us in uniting our global community this Giving Tuesday. We’ve made great strides in recent years, but there is still much work to be done.

Together, we can unite our global community by:

  • connecting patients with Peer Coaches 
  • sharing resources about living with P/P
  • advocating for better access to care

Your support directly impacts patients like Ellen, who is “living successfully with pemphigus, along with several other pem-pals and blister-sisters in Boston.” Join Ellen in uniting our global community on this global day of giving. Your support is critical in ensuring that our programs are available to all those who need them today, tomorrow, and for years to come.

DONATE
Ellen Levine Giving Tuesday
WATCH NOW

The IPPF community brings together patients, caregivers, top physicians, and researchers to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.

Your tax-deductible donation ensures our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

This year we’re kicking off Giving Tuesday by sharing how the IPPF has made an impact in patient’s lives. Join us in uniting our global community on November 29. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

Giving Tuesday 2022

Our goal at the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join us in uniting our global community for Giving Tuesday on November 29. We’ve made great strides in recent years, but there is still much work to be done.

Together, we can unite our global community by:

  • connecting patients with Peer Coaches 
  • sharing resources about living with P/P
  • advocating for better access to care

Check out IPPF Peer Coach Scott Taub’s video to learn more about how the IPPF’s invaluable resources have helped Scott and how you can get involved to make an impact on Giving Tuesday.

DONATE
Scott Taub: Unite our Global Community
WATCH NOW

The IPPF community brings together patients, caregivers, top physicians, and researchers to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.

Your tax-deductible donation ensures our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

Our “Inspiring Hope” series shares patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. This week’s story, Foundation of Hope, comes from Janet Segall, the founder of the IPPF.

I am in awe of the wonderful people who have worked to make this organization into what I dreamed about.

I know many of you can relate to how it first felt being diagnosed with pemphigus or pemphigoid (P/P). After about a year of symptoms, I was diagnosed in 1983 and in a daze. I was in my mid-thirties and raising a child by myself. She was six years old. 

Although it took about a year to get an official diagnosis, I got one pretty quickly once I had more than one or two lesions. Prior to receiving a diagnosis, I went to the dentist to get my teeth cleaned and mentioned to him that I had these body and mouth sores. He got a book from his shelf (no internet yet), opened the page to pemphigus vulgaris (PV), and read, “sores on the body, sores in the mouth—this could be pemphigus vulgaris.” As he read the description of the disease, I knew that was what I had. The last words he read were, “This is a fatal disease.” I walked out of his office with my head down, feeling numb; his staff looked at me like I was a corpse. My first thought was about who would take care of my daughter since she had lost her dad when she was a baby.

I wanted to find other patients. First, I called my doctor and asked if she had heard of a support group or foundation, and she told me there were none. I felt very alone. I thought a lot about starting my own organization right away, but I hadn’t reconciled the fact that I had this disease. Finally, after living with PV on and off for over 10 years, I decided to start a foundation.

The National Pemphigus Vulgaris Foundation was born in 1994 with help from one of the finest dermatologists in the country, Dr. Grant Anhalt, at Johns Hopkins University. He supported me throughout the entire process. The Foundation started as a support network for PV patients, but we later added pemphigus foliaceus and pemphigoid. When the Foundation became the International Pemphigus and Pemphigoid Foundation (IPPF), it was exciting. Traveling overseas to Israel, Italy, and London to start support groups was thrilling. Uniting people from across the globe in their quest for answers made me feel that I had done something good.

The Foundation’s main vision when it started in 1994 was to make sure that no one with P/P would ever feel alone like I did during those first years after I was diagnosed. I am in awe of the wonderful people who have worked so hard to make this organization into what I dreamed about. Thank you to everyone who is committed to this endeavor.

I am so grateful for experiencing the growth and success of the first 26 years of the IPPF. For the next 26 years, I hope for a cure for P/P and that more people will continue to care and help each other.

Janet Segall is the Founder of the IPPF and a PV patient since 1983. She is a peer health coach and works in Sacramento, CA in the mental health field. 

Fund the Future

Be a Healing Hero

Healing Heroes fund the future of the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid.

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

Whether you’re a patient, caretaker, family, friend, medical professional, or rare disease advocate, your monthly gift allows us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.

Fund the future. Be a Healing Hero!

FUND THE FUTURE

Our “Inspiring Hope” series shares patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. Our fourth story comes from David Baron in Chicago, IL.

My story starts in 2004. I was a happy, healthy 28-year-old enjoying my life. I was an airline pilot working my dream job, and life could not have been better. All that changed when my body decided to attack itself. I was on a layover in August 2004, when I woke up with a nasty sore throat. It felt like I had swallowed broken glass and I thought I had strep. I had one flight home, and I went straight to urgent care. The doctor told me that my tonsils were ulcerated, it was likely viral, and it would clear up in a week. After one week, my tonsils healed, and I went back to work. 

Things were good for about a month, then my sore throat came back even worse. This time, I went to an emergency room. The nurse did a strep test, and when she pulled the swab out of my mouth, it was covered in blood. Shocked, she quickly left to get the doctor. A number of x-rays and exams were performed, and about 15 vials of blood were taken. All of the test results came back normal, and the doctors didn’t know what was wrong. They recommended I see an ear, nose, and throat (ENT) specialist.

When I saw the ENT the following week, he told me it was bacterial and that I needed antibiotics. I was on and off antibiotics for the next three months, and the sores in my mouth appeared and disappeared every few weeks. By late 2004, my ENT told me I needed to have my tonsils removed. As an adult, the recovery from that surgery was not easy. 

Things seemed to be better for a few months, but in late February 2005, the sores in my mouth returned. I felt it was time for a second opinion. I found a new primary care doctor who told me, “I don’t know what you have, but I’ll help you find out.” That was something I needed to hear. Even though I didn’t have answers, I felt better that I had a doctor willing to admit that they didn’t know.

My mouth sores continued to get worse, and my doctor continued running tests that all came back normal. Eventually it got so bad that I had trouble eating and drinking, and I became dehydrated. I was admitted to a local hospital. I had a team of infectious disease doctors working on me. They tested over 20 vials of blood each day, and again the results came back normal. I was sent home without any answers. 

A week after I came home from the hospital, I started getting blisters on my chest. My primary care doctor referred me to a local dermatologist, and I will never forget that appointment. The dermatologist walked into the office, saw my chest, and said, “I know what you have, it’s very serious, and I can’t treat it.” He referred me to the University of Chicago and wrote the words pemphigus vulgaris on a piece of paper.

The first thing I did after that appointment was search online for pemphigus. The first result I found scared me. It said that if the disease didn’t kill me, the treatment would. Luckily, the second result was the International Pemphigus and Pemphigoid Foundation (IPPF). The IPPF website had significant information on treatments and living with pemphigus. While I was still scared, the information I found helped me feel more at ease. 

I was now under the care of a dermatologist who had treated pemphigus before, but the initial treatments were not working. I was still continuing to get worse every day. One particular low point was the day my treating doctor walked into my hospital room and said, “I don’t know what other treatments to try.” When I was at my low point, the IPPF was there for me. I needed to find an expert, and the IPPF helped. Through the IPPF I found one of the most knowledgeable dermatologists in the world. I emailed him on a Monday, and he replied within 30 minutes, asking if I could come in two days later to see him. Thanks to that doctor and the IPPF, I not only recovered, but I spent 13 wonderful years in remission. 

Even today, the IPPF is still there when I need them. I recently had a flare, and after spending 13 years in remission I needed to find a new treating dermatologist. With the help of the IPPF and the Find a Doctor map, I was able to find a very knowledgeable new doctor. Any time I’ve needed help, the IPPF has been there for me.

David Baron is a pilot for a major airline in the United States. He lives in the Chicago area with his family.

Fund the Future

Be a Healing Hero

Healing Heroes fund the future of the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid.

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

Whether you’re a patient, caretaker, family, friend, medical professional, or rare disease advocate, your monthly gift allows us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.

Fund the future. Be a Healing Hero!

FUND THE FUTURE

Welcome to our “Inspiring Hope” series. For the next several weeks, we’ll share patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. Our third story comes from Hannah Yale in California.

Empowerment through Community

I was four years old when my dad got sick the first time. For six months he was undiagnosed, and during that time he went blind in his left eye. When he was finally diagnosed with mucous membrane pemphigoid (MMP), my dad got in touch with the IPPF. The IPPF helped him get in touch with other patients who were experiencing, or had already experienced, diagnosis and treatment. The Foundation also gave him a list of doctors who knew how to treat pemphigus and pemphigoid (P/P) to ensure that he received the care he needed. I went to the hospital with my dad every day for his rituximab and IVIG treatments.

In 2008, the IPPF held its annual Patient Education Conference in Dallas, Texas. I went with my mom and dad to meet other patients and families who had been affected by P/P. At the conference, we found a community. My entire family has been involved with the IPPF in some form ever since.

After my dad connected with other pemphigus and pemphigoid patients, he began sharing his own experiences with diagnosis, treatment, and dealing with the effects of his disease. When the IPPF created the Peer Health Coach program in 2018, my dad became one of the first coaches. Just as I was entering high school in 2016, he became the executive director. Around the same time, he had a relapse of his MMP, but was able to recover quickly with rituximab treatment.

Empowerment Through Community

I have often felt powerless when my dad has been sick. Three years ago though, I learned that I am not powerless to help him. In 2017, my dad took me to Rare Disease Week on Capitol Hill, an event organized by Rare Disease Legislative Advocates. We attended with a group of patients, caregivers, and doctors representing the IPPF, and our goal was to speak to members of Congress about legislation that would benefit people with all types of rare diseases. I was able to meet so many wonderful people who shared my feelings and experiences. Going to Rare Disease Week made me realize that even as a teenager, I could make a positive impact.

I now know that I can help people just like my dad always has, and that I am passionate about nonprofit work. I am proud to be able to represent the IPPF through my advocacy for accessible care and treatments. I know that my relationship with the IPPF will continue to grow as I do. The IPPF’s generous staff, compassionate volunteers, and inspiring programs have supported me throughout my life, and they have helped shape who I am today.

Fund the Future

Be a Healing Hero

Healing Heroes fund the future of the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid.

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

Whether you’re a patient, caretaker, family, friend, medical professional, or rare disease advocate, your monthly gift allows us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.

Fund the future. Be a Healing Hero!

FUND THE FUTURE

Hannah is a 17-year-old California resident and a human rights activist. She is a member of the Young Adult Representatives of RDLA and has attended Rare Disease Week on Capitol Hill every year since 2017. Hannah is a first-year student at St. Mary’s College of Maryland, double-majoring in Public Policy Studies and English.

What are Pemphigus and Pemphigoid
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