Events

This page was last updated on June 23, 2020.

As news of coronavirus disease (COVID-19) changes hour by hour, one fact remains constant: The IPPF is dedicated to our community during this difficult time, and we are here to provide support and information. We are working hard to keep abreast of the situation and notify you about updates regarding the necessary precautions and recommendations to keep you safe during this pandemic. We will continue to update information on this page as it becomes available.

As always, we are listening to you during this time. When possible, we will try to answer general questions regarding the unique needs of pemphigus and pemphigoid patients. However, if you have specific questions or concerns about your condition, we recommend that you contact your physician.

Face coverings and masks:

The IPPF follows the evolving recommendations for from the United States Centers for Disease Control and Prevention (CDC) in regard to masks and cloth face coverings.

From the CDC website: CDC recommends wearing cloth face coverings in public settings where other social distancing measures are difficult to maintain (e.g., grocery stores and pharmacies) especially in areas of significant community-based transmission.It is critical to emphasize that maintaining 6-feet social distancing remains important to slowing the spread of the virus. CDC is additionally advising the use of simple cloth face coverings to slow the spread of the virus and help people who may have the virus and do not know it from transmitting it to others. Cloth face coverings fashioned from household items or made at home from common materials at low cost can be used as an additional, voluntary public health measure.

The cloth face coverings recommended are not surgical masks or N-95 respirators. Those are critical supplies that must continue to be reserved for healthcare workers and other medical first responders, as recommended by current CDC guidance.

The IPPF maintains that the best way to protect yourself in the short-term is to stay at home to the extent possible, practice social distancing, and avoid touching your face/wash your hands frequently if you have to go out (and don’t go out if you are sick). Examples of specific circumstances where masks can be worn are if patients have flu-like symptoms and are headed to the doctor to be tested, or if patients are in the middle of rituximab infusions and have to complete their treatment cycle. Guidances are constantly evolving, but we must continue our best efforts to “flatten the curve” of infections that will otherwise overwhelm the health care system.

Questions Related to Pemphigus and Pemphigoid

In response to some common questions we’ve received recently, the IPPF Medical Advisory Council has provided the following answers:

  1. What precautions should patients with open P/P lesions do in light of COVID-19?
    Direct spread through the skin is not a known source of transmission for COVID-19. Keep lesions clean and covered if around others.
  2. If not on any treatment, does simply having an autoimmune disease like P/P make you more susceptible to this coronavirus?
    Pemphigus and pemphigoid patients who are not receiving immunosuppressive therapies are not known to be at greater risk for COVID-19.
  3. Does using topical treatments make you immunosuppressed?
    Not usually. However, if the dosage is more than 20g of a class I steroid (clobetasol or betamethasone, etc.) some steroid systemic absorption occurs. It is possible this absorption can make a patient slightly immune-suppressed.
  4. How long does it generally take for the following medicines to get out of a person’s system and for their immune system to return to normal levels:
    • Rituximab: The formal guidance is typically 1 year, although there is some variability in that response. We know from the published literature that many patients start to make new immune responses by 5-6 months after rituximab treatment.
    • Corticosteroids (systemic prednisone or prednisolone): Within days to weeks, but these cannot be arbitrarily stopped and will need to have the dose weaned properly due to adrenal suppression.
    • Class I Topical Steroids (Clobetasol/Betamethasone): These don’t affect the systemic immune system unless ~20g or more are applied daily. Even if high doses are used, these would “wash out” in days to weeks as above.
    • Azathioprine/mycophenolate mofetil: These take 3 months to “wash out” of a person’s system.
    • Cyclophosphamide: Cyclophosphamide should presumably take 3 months based on mycophenolate mofetil/azathioprine (MMF/AZA) data.
    • Cyclosporine: Cyclosporine should presumably take 3 months based on MMF/AZA data.
    • Dapsone: Dapsone doesn’t suppress the immune system in a way that would be expected to be problematic with COVID-19, and it “washes out” in a week or two.
    • IVIg: IVIg doesn’t suppress the immune system
  5. Is IVIg therapy better than nothing?
    Yes, there were randomized double-blind clinical trials of IVIg performed in Japan that showed that it was modestly effective at improving disease activity in bullous pemphigoid and also was beneficial in pemphigus. The main advantages of IVIg right now are that it is one of the only therapies for P/P that does not suppress the immune system. Additionally, it can be given by home infusion if your insurance approves that form of therapy.
  6. Does Rituxan put you more at risk of contracting a virus than being on high doses of prednisone?
    Rituximab does generally increase risk of viral infections. However, a randomized controlled trial published in Lancet (2017) showed that rituximab is better at controlling disease and resulted in a lower rate of infections compared to high-dose prednisone alone, so this issue would best be left to an individualized discussion with your doctor to determine the risk of disease versus the risk of treatment.
  7. Rituximab treatments have been postponed. What can be done in the meantime?
    IVIg could be considered if the disease is significant, or topical steroids and other non-immunosuppressive measures if that is sufficient to control symptoms. However, severe disease should most likely still be treated, as the risk of hospitalization from severe disease could be worse than treating now to get disease symptoms under control and then self-isolating at home to avoid the risk of infection. Speak with your employer and doctor about flex hours or work-from-home options if immunosuppressive therapies are used.
  8. I work in a hospital where we are getting COVID-19 cases, and I’m on treatment for P/P. Should I stay home from work/take leave?
    You may be at higher risk for severe manifestation of COVID-19. You should speak with your supervisors about opportunities to work at home or in isolation.
  9. Does being on long term, low-dose prednisone make COVID-19 symptoms come slower?
    We do not know the answer to this question yet.
  10. I’ve been in remission, but now seem to be having a flare. Does taking medication put me at high risk for COVID-19?
    Many oral and IV medications may increase the chance that you will have a more severe course of COVID-19. IVIg is likely an exception.
  11. When a vaccine for COVID-19 is available later in the year or next year, would rituximab’s effects on B cells affect the efficacy of the vaccine?
    While we do not have solid data, it is reasonable to assume that rituximab would decrease the efficacy of a COVID-19 vaccine, particularly if the vaccine is given in the first few months after rituximab.
  12. When should the vaccine be given in relation to the courses of rituximab? How many months before or after?
    These issues will affect when the patients should get their next infusion. We do not know for certain, but it is reasonable to think that the ideal time to vaccinate for COVID-19 would be at least 4-6 months after rituximab and at least 1 month before rituximab.
  13. What process should an undiagnosed person follow if they suspect they have a bullous disease?
    Call their local dermatology provider. Avoid the ER if possible. (NOTE: If you need assistance locating a dermatology provider in your local area who is experienced in dealing with pemphigus and pemphigoid, contact us.)
  14. Are there extra precautions that patients should observe as states begin to reopen?
    Different states may be recommending different levels of precautions. Wear a mask or face covering in public; stay 6 feet away from others; wash your hands or use hand sanitizer if you are out in public spaces and avoid touching your face, nose, eyes, and mouth with unwashed hands; wash your hands immediately after returning to your home. Avoid mass transit if possible. Work places may offer flex hours or work-from-home options to help avoid “rush hour” when many commuters are using mass transit. If you cannot work from home or avoid mass transit – follow the guidelines above (face covering, physical distancing to the best extent possible, avoid touching your face with unwashed hands while commuting). If you develop fever, chills, cough, shortness of breath, sudden loss of taste or smell, headache, sore throat, muscle pain, call your primary care doctor for guidance and remember to tell them if you are on immunosuppressive treatments.
  15. Should patients (whether on or off treatment) go out into society and businesses as they begin to reopen, or should we stay home or request letters from doctors to continue to work from home until we know if there will be a big uptick in cases?
    Patients who are off treatment have the same risk from infection as a non-pemphigus or pemphigoid patient. Patients who are on immunosuppressive therapy have greater risk of infection, as well as a more serious course of infection. Flex hours or work from home would be prudent if there is a resurgence of COVID-19 in your community. Speak with your employer and doctor about options.
  16. What precautions should be exercised if a member of the household has to work outside of the home?
    Greater precautions are recommended if you are immunosuppressed and a member of the household works in a high-risk environment (for example, health care or a workplace that requires contact with multiple individuals.) Precautions the household member should consider include wearing a mask, frequent hand washing or use of hand sanitizer, avoid touching the face with unwashed hands while at work, washing their hands immediately after they return home, and surveillance for any of the symptoms of COVID-19 above.

Resources

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United Kingdom

USA

The IPPF provides peer support and information to all those affected by pemphigus and pemphigoid. Our community is strong and we are all in this together. If there’s anything we can do to support you, contact us at info@pemphigus.org.

You may be aware of the IPPF’s advocacy efforts. Now, we need you to advocate, too. Your story is important and shows that rare disease not only affects Americans, but Americans in your district. Your story proves to congressional members that their decisions have a great impact on human life and well-being. The IPPF encourages you to participate in bringing awareness of issues and legislation that affect the rare disease community to your state and federal representatives.

This may seem like a daunting process, but the IPPF is here to help. We have tools to support you as you prepare to speak with legislative members. One of the most important things to remember is that legislators are people, too. Look for common ground—they are parents, brothers, sisters, and friends. Statistically, they almost certainly know someone with a rare or autoimmune disease.

The following suggestions can help you to successfully become an advocate:

  • Contact the IPPF at advocacy@pemphigus.org to express interest in advocating at a local and/or national level. We can explain issues and legislation that the IPPF currently supports.
  • Identify your federal lawmakers by using the online tools at senate.gov (US Senate) and www.house.gov (US House of Representatives).
  • Monitor the congressional calendar. District work periods are the best time for lawmakers to meet with local constituents. Take advantage of the August recess. This is a busy time when many lawmakers hope to meet with their constituents to learn about issues affecting them and what they can do to help.
  • Schedule an appointment by sending a formal invitation to the lawmaker’s scheduler at least three to four weeks in advance of the proposed meeting date. Check your lawmaker’s website, as they may have a formal process for submitting meeting requests.

SAMPLE EMAIL TEMPLATE

Dear [Name],

I am writing to request a district meeting with (insert elected official here). As legislators increasingly play a role in shaping health care policy that impacts my access to quality and affordable care, I welcome the opportunity to discuss with you some of my challenges and opportunities patients face when caring for themselves.

I am available to meet with you on (suggest a few dates that work for you). If those dates do not work for you, I am happy to discuss other options with your staff. I can be reached at (insert phone number) or at (insert email).

Sincerely,

[Your Name]
[Your address]


About a week later follow up with a phone call.

PHONE CALL TALKING POINTS TEMPLATE

Hello, my name is [Your Name].

I’m a patient with pemphigus/pemphigoid in [Your City, State].

I’m following up on a written invitation I sent to [Name of Elected Official] wishing to speak with him/her to discuss issues facing patients like me when trying to obtain quality and affordable healthcare and prescriptions.

I would like to schedule an opportunity for [Name of Elected Official] to visit their office in the next three to four weeks. Do you have any availability?

(If they need time to check on the schedule, give them your name, email, and phone number. Be flexible. If they are unable to meet on the date(s) you suggested, discuss other options with them.)

Ask them if there is any required paperwork you need to submit prior to the meeting.

Thank you for your time, and I look forward to meeting [Name of Elected Official] at their district office.


THE VISIT:

  1. Understand the issues you are about to discuss. This is your story and it is important to use your experiences as compelling evidence of the issues at hand.
  2. Share your concerns with your elected official. If available, use the handouts that the IPPF provides on the policy or regulatory issue.
  3. Get to the point. Don’t take too long to make your pitch. Tell them who you are, the community you represent, the number of patients with our disease, what your primary concerns are, and how and why these concerns are related to a certain piece of legislation or regulatory requirement.
    • This should be conveyed in about 10 minutes.
    • If they ask a question and you are unsure of the answer, please say so and let them know you will find out and get back to them. The IPPF is happy to help you find the information.
  4. Double-check your facts and figures. Make sure that you are presenting accurate information.
  5. Thank your elected official for specific votes and efforts where they have supported legislation that helps our community.
  6. Take a photo with the elected official and their staff. Please share it with the IPPF. We love to post photos of our community participating in advocacy efforts.

Follow up by thanking your elected official for the visit.

THANK YOU NOTE TEMPLATE

Send by email or regular mail.

Dear [Name],

Thank you for taking the time to meet with me on [insert date].

As a constituent, I appreciate the opportunity to tell you about my disease and to share my story with you to see the impact healthcare policy has on patient access to care. It was an honor to meet you.

[Insert main points from the meeting as a way to reiterate your position.]

Please do not hesitate to contact me at [your phone or email address] if you have any further questions regarding [insert legislation or regulation name]. I welcome the opportunity to serve as a resource for you on these important issues.

Sincerely,

[Your Name]


​Follow up with IPPF staff. Share any action items resulting from the meeting with the IPPF advocacy team by phone or email.

We hope this helpful guide encourages you to get you involved in advocating for our community and for those who cannot advocate for themselves. We are always looking for new ways to advocate for the IPPF community and would appreciate any feedback.


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Our final story in our Patient Journey Series comes from Linda:

My journey began in August, 2017. I had a slight rash on my lower back that was extremely itchy. When I went to see my primary care doctor for my annual physical, I mentioned the rash, but he never looked at it. He just brushed it off.

One month later, I spent a week on Cape Cod with my husband, Gary, and family. We walked on the beach and enjoyed the sun, as it was unusually warm and sunny for so late in the season. By the time we got home from vacation, the tops of my arms had a slight rash and were extremely itchy. I didn’t have time to see a doctor because five days later I traveled to sunny Florida with friends, so I bought topical creams and enjoyed the sun and beach once again. 

The Florida weather was perfect, and I spent several hours sitting at the edge of the water enjoying the sand and the cool water running over my legs. It was heaven . . . up until the evening when my legs broke out in a more severe rash that itched all night. I couldn’t handle how itchy my skin was, and the rash had spread. The topical cream wasn’t enough, so I bought Benadryl to help me sleep. I spent the rest of the vacation miserable with the rash and itchiness. I called my primary care doctor as soon as I got home to Connecticut.

The Advanced Practice Registered Nurse (APRN) was baffled when I went in for my appointment. I went through the routine questions about whether I had changed soap, detergent, diet, or medications. She brought another nurse in to consult, and I was asked if I traveled out of the country or whether it could be related to bedbugs. I was given prednisone and sent on my way. They told me if I wasn’t better after finishing the prescription they would refer me to a dermatologist.

While I was on 20mg of prednisone, the rash and itchiness did seem a little better. When I decreased the dosage, they got worse again. I asked for a referral to see a dermatologist and to increase my prednisone dosage back to 20mg; however, my dosage wasn’t increased and the rash and itchiness got worse once again. It was now the end of October and the dermatologist couldn’t see me for three weeks. I was getting worse every day. I couldn’t do anything because of how physically uncomfortable I was. I also felt mentally exhausted and confused about what was happening to me and why.

Finally, I saw the APRN at the dermatologist office. She thought it was something systemic and gave me cream and some antibiotics and told me to return after two weeks. In those two weeks my feet and hands were on fire—red, swollen, and severely itchy. When I returned, they changed my antibiotics, gave me clobetosol salve for my feet and hands, and said, “I think you’re allergic to black plastic.” What?!

I was tested for contact allergies, but all that showed up was a slight allergy to nickel. At this point, I had been taking antibiotics for over a month and everything seemed to be getting better. I stayed on them and I had no rash or itching through March of 2018. I was exercising, taking natural supplements, and following a diet of protein shakes for two meals and a healthy third meal. I had lost 30 pounds.

I stopped taking all medications at the beginning of March. A few weeks later, the itchiness came back, but I couldn’t get in to see the dermatologist right away. When I finally had my appointment, the APRN checked me out and said once again, “I swear you’re allergic to black plastic.” I got rid of my purse and black flip flops, and I was given another prescription for the clobetosol. They told me if I wasn’t better in five days I could come back for a steroid shot. 

After the appointment I was on vacation when the palms of my hands and soles of my feet were hot and itchy. I spent the week with an ice bucket close by to put my feet in and a frozen water bottle to help my hands. My husband and I discussed how none of my doctors had ordered any blood tests. I found out there was a new APRN (an internist) at my primary care doctor’s office, so I made an appointment with her. I also decided at this point to change my diet again. I have suffered from eczema since I was a child, so I looked into the eczema skin diet. I started eliminating things like sugar, caffeine, gluten, histamines, MSG, and dairy. 

I was hopeful at my next appointment, and my husband came with me to make sure that something was finally done to help with my symptoms. After one look at my hands, the internist said, “It all points to an autoimmune disease. Let’s run a complete work up and see what we can find. If nothing comes up, then we will do a skin biopsy.” Finally!

Bullous pemphigoid? What the heck is that?

The blood work results didn’t show anything definitive, but it did show the possibility of an autoimmune disease, so the internist suggested an immunofluorescence test. I asked about conducting a biopsy after it seemed like they weren’t going to follow up with one. The weekend before the biopsy was scheduled, I had strange blisters on my wrists, thighs, and stomach. Although it was sunny, humid, and in the 90s, I wore a long-sleeved jacket because I was afraid people would notice the blisters on my arms and think I was contagious or just freaky looking. My doctor reluctantly took a punch biopsy and told me it looked like possibly poison ivy or a bug bite. I was so frustrated! I asked him why I would have blisters all over from a bug bite? He told me that nine out of ten times nothing shows up on the biopsy results. I left his office super disgusted and on a mission to find a new primary care doctor with a little more care for their patients.  

I was deteriorating—not just physically, but mentally. More blisters showed up. I was itchy and in pain. My skin was red like a sunburn, felt hot, and was slightly swollen. When I got the results from my biopsy, they pointed to bullous pemphigoid (BP). An immunofluorescence test was suggested, but wasn’t setup by my doctor. I had to wait a few days before seeing my doctor to discuss the results and treatment options. 

Bullous pemphigoid? What the heck is that? I immediately started Googling it. The first site I saw was a medical site that explained it as a potentially fatal autoimmune disease, and usually older people get it. Are you kidding me? I searched again and found the IPPF’s website. I couldn’t believe that there was an organization for this strange disease! I found so much information. I was very excited and started crying. Finally, a place that knew all about this disease. I found information about the physician map, signed up for it, and was emailed the information a few days later. I found information about dermatologists that specialize in blistering diseases in Boston and Connecticut, including Dr. Mary Tomayko. She was located about an hour away from me and had a clinic. I felt like I had struck gold! Of course, I cried more.

When I saw my primary care doctor after my biopsy results, he prescribed 40mg of prednisone for a week, followed by tapering every five days by 10 mg. I told him I wanted to be referred to Dr. Tomayko, and he was less than pleasant about it. He basically dismissed me. He also deleted the suggestion of poison ivy and bug bites from my records before sending them off to Dr. Tomayko. I wasn’t able to get in to see Dr. Tomayko for a few months, but I was happy to have an appointment scheduled with someone that should know what to do for my treatment. 

I had many setbacks over the two months leading to my appointment, but I also had support from the IPPF. Becky Strong, the IPPF Outreach Director, was amazing. She helped with my questions and sent me a patient guide to review before my appointment. I also had access to monthly webinars on different topics, and they were amazing. The first one I attended was on the side effects of prednisone. What great timing! After exploring the IPPF site more thoroughly, I saw information about the annual Patient Education Conference in October. My husband told me to sign us both up.

We needed to be more informed and meet other people who were dealing with similar issues. We became Healing Heroes (the IPPF’s monthly donation program) and received a discount on the Patient Education Conference registration. I followed my doctor’s advice about tapering down the prednisone dosage, but found that 20mg worked best for me and told him that’s what I wanted to do until my next appointment with Dr. Tomayko. Thankfully, he listened.

My husband suggested that I take pictures of my blisters in case they were cleared up before I saw Dr. Tomayko. Smart man! While I waited for my appointment, I got my list of questions ready, planned our trip to the conference, and felt somewhat relieved to know we would meet others with similar issues and have access to experts we could talk to. 

When I finally met Dr. Tomayko, I loved her office staff and she was wonderful. I wasn’t able to receive a definitive BP diagnosis until further blood work was done. Since my doctor never did the immunofluorescence testing, she couldn’t be sure. She explained that they needed to look for markers in my blood, which I understood because that was one of the many things I read about on the IPPF website. She ordered additional blood work, a baseline bone scan, a tapering of the prednisone by 2.5mg every seven days, and continued use of the clobetosol as needed. I made another appointment for a month later.

The blood work came back showing BP. In the month prior to going back to see Dr. Tomayko, I had a slight flare up and developed a couple of new blisters. She increased my prednisone dosage again and told me we would talk about an additional drug at my next appointment. At that appointment she prescribed CellCept®. She told me how it works, about side effects, and gave more instructions on my care, including a schedule of how she wanted me to taper off the prednisone.

We told her that we were attending the IPPF Patient Education Conference, and she was very excited. She told us what a wonderful idea it was, that we were going to enjoy it, that we would have all our questions answered, and to say hello to her dear friend Dr. Donna Culton (the conference co-host). We left feeling even happier about our decision to attend.

A short time later, my husband and I were off to the conference! We were both excited to gather with other patients and experts in the field. For the first time in a long time, I felt comfortable and at ease. Not only would I have an opportunity to meet others that would completely understand what I was going through, but my husband would also have an opportunity to gather with other caregivers who were supporting each other in their journeys as well.

I may be the patient, but this journey includes everyone in my inner circle, and they need support just as much as I do. Our lives have been disrupted and changed forever. We as patients need to keep in mind that we are not the only ones who suffer—those around us have to watch, sometimes helplessly, as we go through this. They are unable to do anything but comfort us. And in many cases, they take on extra work that they haven’t previously done.

As a licensed massage therapist, my husband knows how muscles and tendons work and interact. He discovered that BP gets worse around your flexors. The palms of my hands were swollen, so the more I used my hands and flexed my fingers etc., the worse it got. He took over the cooking in our house after never cooking full meals before. But he conquered his fears in the kitchen and kept us going. 

We arrived in Durham, NC, the day before the conference started due to a hurricane. There was an extra day planned for those of us who wanted to attend Dental Day at the University of North Carolina Dental School. Becky Strong started the day by sharing her story with pemphigus vulgaris (PV). It was hard to listen to because it brought up so many emotions for me. It was good for me to hear though, because listening to her in person made me truly feel that I was no longer alone. And she survived! She looked whole and happy. It was important for me to hear her story since I was still at the beginning stages of my disease. It was such a comforting and educational day. We met and spoke with so many other patients. In fact, one of the women I spoke to said they had just met another patient from Connecticut and planned to introduce us.  We got the chance to speak with Dr. Culton as well, and I told her that my doctor was Dr. Tomayko. She was excited to know that I was seeing Dr. Tomayko. What a good feeling that was!

The next day was a full schedule. After welcome announcements, we listened to Kenny Metcalf (Elton John entertainer) tell about his journey with PV. It was an amazing story, which included pictures of him throughout his disease. After seeing the pictures and his condition, one would never think that he had survived. But he’s alive, whole, happy, and doing what he loves—entertaining people with his gift of music. The rest of the day was broken into different pemphigus and pemphigoid sessions geared toward our own journeys. Our diseases may be similar, but they are also different. It was great to know that the speakers would address our disease-specific issues. Additionally, those in each session shared similar issues. We were able to swap information and keep in contact after the conference ended.

In the evening, we attended the awards dinner. This was totally different than a typical awards dinner. We were all relaxed and got to know each other as we ate and listened to music. We didn’t walk into the room and wonder who we could sit with. This was now a large group of friends, and we all had a common thread that joined us together. We weren’t rare in this room full of people! The camaraderie between all of us, including the doctors, was truly wonderful. The most memorable of all was the entertainment by Kenny Metcalf. He started our day with an emotional story of his life with PV and ended the day with a great show. He was Kenny, playing the part of Elton John in the early years. He was amazing! He had everyone singing and dancing, and there was just pure joy throughout the room. I can tell you this, I will never hear the song “I’m Still Standing” without smiling—and maybe even shed a few tears—while thinking of Kenny. In my mind, that will forever be the IPPF theme song. We’re still standing!

The last day was a half day of workshops. There were so many good ones to choose from—women’s health issues, ocular issues, wound care, and an extremely important one that made a difference for us: caregiving. My husband joined the caregiver workshop led by Janet Segall, the IPPF’s founder. He felt so much relief after attending that session. He was able to discuss his concerns and hear what the other caregivers were going through. He said that Janet led the session with great empathy, concern, and experience.

When the conference was over, it seemed too soon. We covered a lot together in just a few days. Both Gary and I felt relieved and so much better. We felt like we were part of a much bigger family and had made new friends who we shared similar experiences with. We had names and numbers to reach out to when things seemed too crazy to deal with alone.

The IPPF conference was the light and guide that walked us through a very dark tunnel. A tunnel we would’ve walked through alone. But everyone involved turned up the light nice and bright, and we found we were two of many. We were not alone and we would never feel alone again! We cannot wait to attend the 2019 Patient Education Conference in Philadelphia this year. We cannot wait to have the opportunity to reconnect with those we met last year and to connect with new friends. We hope that we are able to answer questions or just be supportive to those who are new to the conference and/or these diseases, to find out what is new with research and medications, and to hear the voices of other experts in the field. If you’re able to join us, look for Gary and me. We would enjoy that. And if nothing else, you’ll see, I’m still standing!

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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:


Help patients like Toby connect with the resources they need to live—and thrive—with pemphigus and pemphigoid.

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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 2001, 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 11 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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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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Ryan Stitt and Dr. Ricardo Padilla

On October 12, 2018, I participated in the IPPF Dental Day as part of the 2018 Patient Education Conference. Dental Day was hosted at the UNC Adams School of Dentistry by Drs. Donna Culton and Ricardo Padilla. As a dental student, I found this to be by far the most exciting and enriching experience of my dental school education to date.

Pemphigus and pemphigoid (P/P) patients traveled from different parts of the world to attend the conference. During the Dental Day event, dental and dental hygiene students were put into groups under the supervision of UNC faculty. We performed thorough extraoral (head and neck) and intraoral examinations on P/P patients. We discussed their diseases as they related to oral symptoms and oral care, and learned about the personal implications of living with P/P. Students provided patients with oral hygiene instructions and suggested products and techniques to aid in disease management. We also encouraged them to establish a dental home if they did not already have one.

As students, we learned about using the Nikolsky sign in the oral mucosa to aid in the diagnosis of P/P. In order to help dental students better understand P/P, patients allowed us to poke and prod their oral tissues. The initial examination gave us clues about the type of autoimmune disease that the patient might have, though definitive testing would still be required to confirm a diagnosis.

For me, one particular interview with a patient was impactful. She informed me that she lived in a town where access to medical care is limited. She explained that for the majority of her life, she had no idea what her disease was because pemphigus is such a rare disease, and she was delayed in being diagnosed. The conversation filled me with a feeling of purpose and provided an understanding of what it may be like to treat patients as a dentist specializing in oral disease diagnosis.

Dental Day facilitated a learning experience for both students and patients. For the students who participated, we were fortunate to perform clinical examinations on P/P patients. Patients were also given the opportunity to teach future healthcare providers about their autoimmune conditions. I believe that these types of extracurricular experiences make one’s dental school education truly amazing.

I want to acknowledge the hard work of the faculty and staff for hosting the event at our dental school. I cannot overemphasize what this wonderful experience has given me as a dental student. I am extremely grateful that I was able to meet so many P/P patients and learn firsthand about what it’s like to be afflicted with this type of autoimmune disease. I’d also like to thank the patients who participated and allowed us to learn more about their conditions. Since P/P are such rare and interesting diseases to study, I am hoping to attend the upcoming 2019 Patient Education Conference in Philadelphia in order to continue learning about the latest P/P information and disease management.

Ryan Stitt is a rising third-year dental student at the UNC Adams School of Dentistry. He enjoys treating patients in clinic and participating in group-based extracurricular activities. In his free time, Ryan designs and crafts zip lines at his home and practices playing the guitar.

The Sy Syms Foundation has awarded a $100,000 grant to the International Pemphigus & Pemphigoid Foundation (IPPF) in support of the IPPF’s Biopsies Save Lives Campaign. This will be the seventh consecutive year the Sy Syms Foundation has supported the Awareness Program.

Since developing the Awareness Campaign in 2013, the IPPF has reached thousands of dental professionals and students. Due to its continued growth and impact, the Awareness Campaign transitioned into a permanent Awareness Program in 2017. This year the IPPF Awareness Program launched a media and marketing campaign that stresses the importance of a biopsy when diagnosing pemphigus and pemphigoid (P/P).

The new campaign centers on a single take-away for dental professionals: “Biopsies Save Lives— 4 questions to ask your patient to determine if a P/P biopsy should be considered.” A new information card was created to help dental professionals both recognize the symptoms of P/P and emphasize the importance of a biopsy. The campaign’s focus includes spreading awareness by exhibiting at dental conferences, emailing dentists throughout the country, reaching out to local dental societies, presenting at dental schools, increasing visitors to the website, and training Awareness Ambassadors to reach local dentists.

“We are incredibly grateful for the continued support of the Sy Syms Foundation,” said Kate Frantz, IPPF Awareness Program Director. “This is a pivotal year for the Awareness Program. We’ve launched our Biopsies Save Lives campaign, which includes new resources for dentists, an increased focus on marketing and communications, and enhanced methods for getting our messages out faster to even more dentists. We cannot thank the Sy Syms Foundation enough for their support in our efforts to accelerate pemphigus and pemphigoid diagnosis times.”

The Sy Syms Foundation was established in 1985 by retail entrepreneur and humanitarian, Sy Syms. His mission was to support education, and through his generosity the non-profit Foundation has affected the continued growth of many institutions of higher learning, medical research, and civic and cultural bodies. For more information on the Sy Syms Foundation, visit sysymsfoundation.org or call (201) 849-4417.

As a NORD IAMRARE™ Registry Partner, the IPPF is proud to share that a new book, The Power of Patients: Informing Our Understanding of Rare Diseases was published today by the National Organization for Rare Disorders, Inc. (NORD) and Trio Health. The book features natural history data collected from the IPPF, a member of NORD’s IAMRARE registry community.

The Natural History Study is an online data system that collects, stores, and retrieves patient data for analysis in research studies. It is designed to help the medical and research community understand illness trends, treatment outcomes, disease burden, and some important demographic information about patient age and gender.

By sharing stories, celebrating community-driven teamwork, and exhibiting data from the registry community, The Power of Patients illustrates the promise and potential of natural history studies and highlights the vital importance of patient participation.

“At NORD, our priority is to create real change and accelerate progress for the rare disease community. By working at the intersection of research, policy, and education, we demonstrate the power and possibility of patient-reported, real-world evidence,” said Peter L. Saltonstall, President and CEO of NORD. “Created in collaboration with Trio Health, The Power of Patients amplifies the experiences of individuals and families living with rare diseases, and demonstrates the importance of registries and natural history data in helping to shape the way the rare disease landscape is navigated by patients and their physicians.”

Continue reading the full press release to learn more about the new book and the stories and data collected.

Thank you to everyone in our community for making 2018 a great year!

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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.

The Sy Syms Foundation has awarded a $75,000 grant to the International Pemphigus & Pemphigoid Foundation (IPPF) in support of the IPPF’s Early Diagnosis Awareness Program. This will be the sixth consecutive year the Sy Syms Foundation has supported the Program.

Since developing the Awareness Campaign in 2013, the IPPF has reached thousands of dental professionals and students. Due to its continued growth and impact, the Awareness Campaign transitioned into a permanent Awareness Program in 2017. A particularly successful aspect of the Awareness Program is the innovative Patient Educator Program, which sends pemphigus and pemphigoid (P/P) patients to dental schools across the US to share their stories of delayed diagnosis. These emotional stories compliment traditional lectures, encouraging students to remember P/P should they encounter symptoms in future practice. Since March 2014, IPPF Patient Educators have provided over 60 presentations at 20 different dental schools, reaching more than 6,500 students and faculty.

“The Sy Syms Foundation’s continued support makes our Awareness Program possible,” said Kate Frantz, IPPF Awareness Program Director. “Because of their generous funding, we have been able to increase our Program’s impact, reaching thousands of dentists, dental hygienists, faculty, and students who now have pemphigus and pemphigoid on their radar! We are hopeful that patients will be diagnosed sooner and we have the Sy Syms Foundation to thank for this.”

The Sy Syms Foundation was established in 1985 by retail entrepreneur and humanitarian, Sy Syms. His mission was to support education, and through his generosity the non-profit Foundation has affected the continued growth of many institutions of higher learning, medical research, and civic and cultural bodies. For more information on the Sy Syms Foundation, visit sysymsfoundation.org or call (201) 849-4417.

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.

It can be difficult to accept the news of a lifelong chronic disease. It may be easier to understand the diagnosis of appendicitis when a procedure is needed, or medication to treat a cold, or the need to use crutches for a couple of months because of a broken bone. But accepting a disease like asthma, diabetes, lupus, pemphigus, or pemphigoid may be more difficult. Managing your life first begins with a strategy to live with your medical condition.

Here are some strategies that may help you cope with and manage a medical condition.

Acceptance:
It is normal to feel surprised, have questions, and even resent a diagnosis of a long-term medical condition that requires management. Accepting a diagnosis, learning about your illness and taking responsibility to manage your condition will help you gain the needed skills to care for yourself.

Understand your condition:
Learn everything that you can about your medical condition, including signs, symptoms, diagnosis, treatment, specialty care, medication, insurance, flare-ups, behavioral health care, nutrition, exercise, and on-going research. It may be helpful to and keep a journal of these details.

Make your doctor and medical specialists your partners in care:
Partner with your doctor and work with them to include the appropriate specialists for your care in terms of treating and managing your condition long term. Keep a journal and share it with your healthcare team regarding questions that you might have, and write down courses of action that are being taken to address those questions. This will help with the coordination of care between you and your specialists.

Make a healthy investment in yourself:
Invest in the time now to make healthy lifestyle changes that your healthcare team recommends. Taking steps to improve your life in these ways may be beneficial in the long run. I was not only very weak, but I also felt stressed during my initial treatment of bullous pemphigoid (BP). In addition to my medical care, my doctor recommended short walks, gentle yoga, meditation, and exploring my faith. I began to feel better and stronger after following my doctor’s guidance.

Make it a family affair:
While making lifestyle changes to manage chronic conditions like pemphigus vulgaris (PV) or BP, it’s important to keep friends or family in your life. Most likely they’re concerned about you and want to be in your circle of relationships to support you. Let friends and family know how they can help you.

Manage your medications:
Knowing about the medications that you take, possible side effects, dosage, and how to take them is important. Always keep a list of this information and change it anytime your doctor changes your prescriptions. Also, keep the name and number of your pharmacist handy should you have questions.

Manage your behavioral health needs:
Managing a serious illness or chronic health condition can feel overwhelming. Share with your doctor if you’re having a tough time and discuss the advantages of counseling, medication, and other therapies. There are many computer and phone apps that can help with memory, lists, or brain fog. Check out this article on The Mighty for more information.

Resources:
The International Pemphigus & Pemphigoid Foundation (IPPF) is a rich resource that offers a wealth of information, including coaches, library, webinars, support groups, research updates, conferences, and social media. Visit https://www.pemphigus.org/ for more information.

 

Even if you don’t have a medical condition, it’s always wise to have your medical information accessible “in case of emergency” (ICE). It’s a good idea to wear a medical alert bracelet or carry a medical ID with you, but since many people carry a cellphone at all times, it’s a great idea to use or install a health app. There may be a ♥ symbol as the health icon on your screen.

A medical ID app has all your pertinent information in it, including any medical conditions you have. I have “in remission from pemphigus vulgaris,” along with my other conditions. You may want to state that you have one of the P/P rare diseases, or diabetes, or rheumatoid arthritis, or that you have a pacemaker. List your allergies and reactions, the name and phone number of your primary care physician or specialist, current medications, and an emergency contact. The app may also include your height and weight, which is important for medications given while in the care of a paramedic or the emergency room.

In February 2017, the IPPF joined the Friends of the National Institute of Dental and Craniofacial Research (FNIDCR) Patient Advocacy Council (PAC). This group is made up of patient advocacy organizations whose patient members’ conditions and diseases include an oral component and have a stake in research supported by the NIDCR. The group is supported by the American Association for Dental Research (AADR).

The AADR and FNIDCR will hold an Advocacy Day on Capitol Hill on Tuesday, February 27. Members and patient advocates will meet with members of Congress and Hill staff to advocate for dental, oral, and craniofacial research. They will emphasize how important investments in biomedical research and oral health programs are in impacting the people in their home states and beyond.

The IPPF had the pleasure of interviewing Lindsey Horan, AADR’s Assistant Director of Government Affairs about their 2018 Advocacy Day and important legislative issues.

IPPF: What is your goal for your advocacy day? What do you hope to achieve?
Lindsey Horan (LH): Our overarching goal for Advocacy Day is to educate on and raise awareness for dental, oral, and craniofacial research with members of Congress and congressional staff.

As oral research advocates and stakeholders, we know that oral health is integral to overall health, but it’s critical to stress that to the policymakers who are weighing competing priorities and are responsible for divvying up federal funds across government agencies and programs. The Hill visits our members conduct on Advocacy Day have the opportunity to demonstrate the far-reaching nature of oral health research and, most importantly, to share their personal stories—whether it is the story of a patient whose life has been impacted by an oral disease or condition, or a researcher whose work is positively shaping the trajectory of dental and oral care we provide in this country.

IPPF: Which legislative issues are of priority for the AADR/FNIDCR this year? Why are they important?
LH: Our legislative priorities for AADR and the Friends of NIDCR will be consistent with the priorities from 2017, and they largely relate to securing the highest possible federal funding for oral research and oral health programs. While this certainly includes the National Institutes of Health and the National Institute of Dental and Craniofacial Research (NIDCR), we also champion agencies whose work touches oral research in some capacity, such as the Centers for Disease Control and Prevention and its National Center for Health Statistics and the Agency for Healthcare Research and Quality.

Heavily focusing our legislative portfolio on appropriations is reflective of the fiscal and political environment in which we’re operating. Congress has to make difficult decisions about how to tackle a mounting federal debt and deficit, and we want to ensure that shortsighted cuts aren’t made in the name of savings. In the absence of our community speaking out—loudly—about these federal agencies and programs, lawmakers will see a win-win scenario: being able to cut funding with little to no pushback.

IPPF: What can those who are unable to attend Advocacy Day in DC do to advocate locally?
LH: There is so much that can be done locally—even from home—to champion oral research throughout the year.

First, it’s important to remember that members of Congress are not in Washington, DC, year round. They regularly return home to meet with their constituents, and these visits are great opportunities for people to voice their priorities or concerns. Sign up for your elected officials’ email listservs to learn about upcoming town halls or other events where you might have an opportunity to speak with them. At the end of the day, constituents are the people members of Congress want to hear from most!

Additionally, don’t underestimate the power of social media. Virtually all Senators and Representatives are active on Twitter, Facebook, and other social media platforms—and they pay attention to them. While seemingly inconsequential, research has shown that it doesn’t take many Tweets on a given topic for staff to pay attention, especially if the Tweets come from constituents (and constituents should identify themselves as such in their Tweets).

IPPF: Do you have advocacy alerts or ways to stay updated throughout the year on important legislative issues?
LH: Absolutely. We want to make sure our community knows how developments at the federal level may impact our field and the research enterprise more broadly.

The first resource I would recommend is our Government Affairs & Science Policy Blog (http://ga.dentalresearchblog.org), which is regularly updated with advocacy and policy news. And to make it easy for readers, there is an option to subscribe to the blog, so new posts will come directly to your email. We also post information to our Twitter account (@DentalResearch). These are great places to learn about any new action alerts or opportunities for engagement.

There are also a number of opportunities available through AADR membership (http://www.iadr.org/AADR/Join-Renew/Join-Us) for those who want to further engage, such as the potential opportunity to serve on committees like our Government Affairs Committee and joining us on Capitol Hill for Advocacy Day.

IPPF: Is there anything else you’d like to share?
LH: I know people often shy away from advocacy for a variety of reasons—they worry about bringing politics into the workplace, they are put off by the term, or they don’t see the point. To this I would say:

  1. As an American citizen, you have a right to petition your government as outlined in the Constitution. It’s correct that many employers do have rules related to advocacy, but they do not prohibit you as an individual citizen from being able to advocate. To clarify what is and is not allowed, talk to the government or public affairs staff at your organization or institution.
  2. For those who don’t quite understand or are put off by the term “advocacy,” think of it as education. When you reach out to members of Congress, you are sharing your story, explaining your work, or demonstrating how a program is making a difference in your community. Members of Congress and congressional staff are grappling with information overload. Meeting with them provides an opportunity to share what you know so that they might better understand the issue and how it fits into their legislative priorities.
  3. Finally, advocacy does make a difference. While a phone call, a Tweet, or an email seem too small to be significant, they add up—and we have seen this demonstrated time and again. Just recently, a provision in the House’s first version of the tax bill calling to tax graduate students’ tuition waivers as income received so much pushback from the community that it was removed in the final legislation. Speaking up and speaking out matter!  

A huge thank you to Lindsey Horan for taking the time to answer our questions!

IPPF Awareness Ambassador Coordinator, Bryon Scott, will attend Advocacy Day on Capitol Hill this year. We look forward to updating you on his experience and the outcome of his advocacy.

Now that you know what you have been diagnosed with, it is important that all of the doctors who treat you are aware of pemphigus and pemphigoid (P/P), too.

This includes pemphigus vulgaris, bullous pemphigoid, mucous membrane pemphigoid (aka ocular cicatricial pemphigoid), pemphigus foliaceus, pemphigus vegetans, IgA pemphigus, paraneoplastic pemphigus, or gestational pemphigoid.  

All P/P rare autoimmune diseases are skin-blistering conditions. Steroid medication is often recommended in conjunction with immunosuppressant therapy in order to lower steroid dosages and bring the patient to remission (or at the very least, on a low-dosage maintenance program).

Since this is a condition that affects the skin, any invasive surgery will require an adjustment to medications prior to and after the procedure. This includes dental work (i.e. tooth extraction). Definitely for knee replacements, hip replacements, and any other invasive procedure.

Therefore, it is very important to advise your primary care physician, dentist, internist, rheumatologist, ob-gyn, and any other medical professional you are seeing on a regular basis. Each doctor needs to know about your new diagnosis and the medications you are taking, including any adjustments throughout your treatments, so they can keep track as well.

Your entire medical team is working together to keep you healthy, and keeping all of them in the loop is to your advantage.

Rebecca Oling and Dr. Cataldo Leone

It wasn’t easy getting to this meeting. After a four-hour train ride, I decided to walk to my hotel, nearly two miles away. It was rush hour, days after a major snowstorm. Boston was cold, and the streets were crowded with traffic barely visible beyond mounds of blackened snow. The walk was neither refreshing nor picturesque; it ended with a gauntlet of addicts outside the methadone clinic near my hotel. No sooner did I arrive in my hotel room when the phone rang. He was early, and I was spent. Everyone has a story.

There is a saying that one should never be too busy to meet someone new. Most of us are so harried or exhausted that we forget to hold a door, to let someone hop a grocery line, to stop for someone who seems lost. Or, these days, to even look up. Last month, during that post-snow Boston trip, I took a chance to set up a meeting with Cataldo Leone, DMD, the Dean for Academic Affairs and Professor of Periodontology and Molecular and Cell Biology at Boston University (BU).

It was immediately apparent that Dr. Leone was the type of person who takes the time to be kind. He was thoughtful and could not have been more accommodating, offering to pick me up directly at my hotel. From there, we headed to a favorite restaurant where he had much-needed business to conduct: confirming arrangements for his mother Carmella’s birthday brunch the following Sunday.

Students do show up—sometimes out of hunger and looking for free pizza—often with an intense curiosity at the opportunity to meet someone with a rare disease they might someday see in practice.

Dr. Leone was a catch of an interview, not only because he is such a busy person, but also because he has taken some of what the IPPF has provided in patient educator presentations and molded it to his needs at BU. As part of the IPPF Awareness Program, patient educators visit dental schools and talk to students in oral pathology courses about their diagnosis journeys. These presentations are paired with clinical disease information. The aim is to ensure that students recall what they have learned and understand the importance of early diagnosis from both a clinical and emotional perspective. But that isn’t quite how the story went at BU for the IPPF.

The IPPF has presented at BU twice in as many years. We have long asked for these experiences to be part of the curriculum, as a kind of requirement. Dr. Leone has felt that making it a requirement risks students coming with ulterior motives—namely, to get the credit. This past year, Dr. Leone acted on a visceral understanding that offering these “lunchtime learning opportunities” was memorable and effective enough that it was worth seeking out patients with other rare ailments. Students do show up—sometimes out of hunger and looking for free pizza—often with an intense curiosity at the opportunity to meet someone with a rare disease they might someday see in practice.

With this approach, Dr. Leone has created a kind of community of practice. It was not what we expected when the IPPF began the Patient Educator Program, but that’s the beauty of what Boston has done. Rather than turning away from the opportunity altogether, Dr. Leone worked closely with Kate Frantz, IPPF Awareness Program Manager, to ensure that BU’s participation aligned with the program’s guidelines. The IPPF’s Awareness Program can typically pay for the speakers’ travel and expenses if the school can meet an attendance requirement of 100 people. Because BU so valued the program, they offered to sponsor the IPPF’s visit. With approximately 80 students routinely attending the lunchtime presentations, it is clear from comments that students are actively learning lessons they will remember for years to come.

“We know each school is unique,” Frantz said. “Ultimately, what is most important is raising awareness of pemphigus and pemphigoid. Boston University is a terrific example of a school with a unique vision that is willing to work with us to make that vision a reality.”

About 10 to 15 percent of the BU School of Dental Medicine student body chooses this enrichment without enticements, according to Dr. Leone, further justifying the investment. Students take the time to show up. His eyes gleam as he admits he’d like to do more actual assessment of these programs. He’s also quick to point out that assessment is a tool to measure impact and that you can already feel that the “ball is rolling.” The patient educator approach is impactful precisely because it’s personal “when you interact with people. As people to people it is always better than one dimensional.”

Part of the multidimensional success of the BU School of Dental Medicine enrichment opportunities must be credited to Dr. Yoshiyuki Mochida. When he began to work at BU in 2009, Dr. Mochida’s interests were in rare diseases affecting craniofacial tissues. Mostly, he had been working on Dentinogenesis Imperfecta (a rare, inherited disorder in which the teeth are discolored, often translucent, and break easily). He was contacted by the boyfriend of a woman with the disease who must have seen his name associated with the research on the subject. The woman’s daughter also suffered with the same disease. Dr. Mochida helped by setting them up as patients in BU’s clinic. In 2015, a second family contacted him. This time, it was to get help advocating with an insurance company (Dentinogenesis Imperfecta is not covered in Massachusetts because it is considered a congenital dental issue. It is only covered in one state—New York). The problems patients faced became Dr. Mochida’s problems, and this led him from research to action. In that same year, the IPPF sent Becky Strong to BU as a patient educator, and the pair met.

Awareness is situational. It is about context. It is about the scene and the story.

“It struck me that this could be a series,” Dr. Mochida said. It could only benefit dental students to understand these complex awareness and advocacy issues as they embark on their professional careers. Perhaps P/P, like Dentinogenesis Imperfecta, are inherited, impacting the patient’s concerns about having a child. Maybe pemphigus and pemphigoid are not daily encounters in clinical practice, but clinicians will see these or similar diseases—with all their symptoms and accompanying complications. Dr. Mochida felt it was imperative to make this clear to his students. “I was already sparked on the rare disease path and the patient needs,” he explained, “but students might not be thinking about all those factors that affect a patient’s ultimate success.”

Dr. Mochida approached Dr. Leone with the idea about an enrichment series. He then contacted the National Organization for Rare Disorders (NORD) to find more patient speakers. NORD referred Dr. Mochida to the IPPF. Though clinicians have often used actual patients as models of one issue or another, the idea of partnering with patients as educators—true experts in their own experiences and diagnostic pathways—is an exciting and new development. According to Mary Dunkle, Vice President for Educational Initiatives at NORD, the IPPF’s program is an “excellent service” that is “absolutely innovative.”

In fact, NORD began to see the value of such a service three years ago when it sent a contingent of patients to the annual American Medical Student Association conference. Dunkle was hooked. “I was struck by the number of students who told us there, or who wrote to me afterwards, that they would ‘remember this for the rest of my life.’” It’s an effective way to train the whole clinician: remind them that patients are people, each with a unique disease story.

For the IPPF, partners like NORD can help to get patient stories across to a wider audience, while also paving the way for other patients to share their experiences. Though NORD’s program is newer than the IPPF’s, the “demand is there,” Dunkle affirms. “We often get requests for various community events—not necessarily in the classroom.” This is an important distinction from the IPPF’s focus on curricular ties. However it happens, the stories “go with these students the rest of their lives.”

There are myriad ways of communicating patient stories, especially when shared opportunities make sense for an organization and its patients. As a patient and former board director, what matters most to me is that there are passionate people who aren’t afraid to tell their stories with a clear goal in mind, even if it doesn’t begin the way we envisioned. Awareness is situational. It is about context. It is about the scene and the story. And while we can never be “too busy to meet someone new,” we should also never be so myopic as to ignore the opportunities that life presents when our stories come together. What is your story? How might being open to it, learning to tell it, and understanding how it intersects with others change the status quo?

The International Pemphigus and Pemphigoid Foundation (IPPF) is pleased to announce the availability of a seed grant program to encourage and support patient-oriented research of pemphigus and pemphigoid. The intent of these grants is to support well-defined research projects that have a specified benefit for improving the treatment, health, disease management, or diagnosis of persons with pemphigus and pemphigoid. Consideration will also be given to studies that contribute to the body of medical knowledge of pemphigus and pemphigoid.

Pemphigus and pemphigoid are rare, autoimmune blistering disorders with an estimated U.S. annual incidence of approximately 2,500 people and world incidence of 40,000-50,000 people. These conditions are difficult to diagnose and debilitating for patients. If extensive, blistering can lead to life-threatening fluid loss, infection, and disfigurement. Pemphigus and pemphigoid can also cause significant damage to the skin, including nail loss and pigmentary alteration, making timeliness of intervention and treatment essential to prevention of disability. Pemphigus and pemphigoid currently have no cure.

“The IPPF Grant Program will help provide seed grant funding for research of diseases whose patients have unmet medical needs,” said Marc Yale, Executive Director, of the IPPF. “We hope this program will encourage advancement in patient-oriented research in pemphigus and pemphigoid.”

The IPPF anticipates awarding 4-8 one-year grants in 2017 with values ranging from $25,000 to $50,000. IPPF Research Grants are currently open to applicants based in the U.S.

Application Schedule

  • Letter of Intent deadline for FY 2017 is February 28, 2017
  • Application deadline for FY 2017 is March 31, 2017
  • FY 2017 award announcements will be made on June 30, 2017
  • FY 2017 funds will be awarded by August 1, 2017

Each research proposal is reviewed by the IPPF’s Research Committee, which recommends funding for the highest scoring proposals. The grant review process is based on the peer review system used by the National Institutes of Health (NIH). Applications are individually scored by each member of the Research Committee, and scores are added together to determine the final ranking of each proposal. Any reviewer with a conflict of interest is excused from voting on that specific proposal. The grant selection process is unbiased and independent; awards are based solely on scientific merit.

Application Process

  1. Download and complete the IPPF Research Grant Guidelines and Application Form from the IPPF website: https://www.pemphigus.org/research/ippf-research-grant-program/
  2. Attach the following: CVs and/or bio-sketches, letters of support/recommendation, and letters from collaborators agreeing to participate
  3. Submit the completed application with attachments to grants@pemphigus.org

The application, along with the attachments, must be assembled and submitted electronically as a single PDF to grants@pemphigus.org