Category Archives: Blog

I came down with my first symptoms of pemphigus in the early part of 1994. I have been in remission since 1998 — 16 years without medications or blisters. My life is so different now and I rarely think about it. But it wasn’t always this way.
After I bought my first computer I started searching for information about pemphigus. I came across the IPPF’s online discussion group. I cringed as I read each email and was reminded of how uncomfortable and unnerving this disease can be. I thought about how I managed to go into remission and remain blister-free for so many years, and what it was I might say to the group that could provide some hope of a similar outcome.
I kept journals during the time I had pemphigus, and wrote in them nearly every day. I recorded my medications and my physical state, thoughts and feelings. It was comforting to spell out my changing moods, from hope to despair, and vice versa.
My journals became a confidant of sorts, where I could bitterly complain about my condition, or exalt over the slightest sign of improvement. They also became a valuable source of insight when I looked back through them in my second year of pemphigus and found a pattern of ups and downs that seemed to correspond to those times when I had experimented with various vitamin and mineral supplements.
I could see after adding supplements for a few weeks my entries were more upbeat and optimistic; and when I quit taking them, I became discouraged and frustrated. I tried the vitamins several times to see if I continued to improve. Within 6 months I saw my blisters healing, I tapered off of prednisone, and entered remission. I can’t say for sure taking supplements led to my remission, but I think it’s safe to assume improving my overall health increased my chances.
One key element that could have helped is the mineral zinc. Zinc stimulates the adrenal glands to produce natural corticosteroids. Prednisone is a synthetic corticosteroid. It’s possible increasing zinc levels lowered my need for prednisone while restoring the natural secretion of corticosteroids helping the immune system distinguish between healthy tissues and foreign “invaders.” Zinc also plays a role in the Thymus gland, which produces regulatory T-cells (or T-regs), responsible for secreting immunosuppressants.
You should know I never considered supplements a substitute for prednisone or any other medication prescribed by my doctors. I never deviated from my doctor’s orders. I learned certain key vitamins and minerals are depleted by prednisone and other drugs, including Folic Acid, Magnesium, B-6, B-12, Calcium, and Vitamin D.
I chose a multi-vitamin supplement containing 23.5 mg. of zinc and the recommended levels of other nutrients to counter that effect. After several weeks I reached a relatively normal balance between the two. At least I was able to get through the disease and function without experiencing severe side effects drugs can produce.
Adding a supplement to your diet is something you should to discuss with your doctor. Finding the right multivitamin for you is easy. What was once unique to the health food market is now a common formula found in most pharmacies under a variety of brand names.
The farther away I get from my experience with pemphigus, the less I think about it. The years have gone by quickly. Now that I am retired, I find myself working quietly at home doing things I love, and feeling very grateful for having come through it without any long-term effects.
I no longer take the supplements I feel helped me to recover, or any medications at all. I believe I am living my life the way it was meant to be, but I still keep a journal of sorts. You never know when you might want to look back and remember the good days, as well as the bad.
The Bay Area Support Group meeting was held on September 29, 2012 in Palo Alto, CA. The enthusiasm, energy, and support was incredible! IPPF Medical Advisory Board member and 2013 Patient Conference host Dr. Peter Marinkovich led a midday discussion for more than 40 attendees on a beautiful Bay Area Saturday. Sponsoring the meeting were Dr. Mike Rigas (KabaFusion) and Susan Billat (BIOFUSION). Also in attendance were IPPF CEO Will Zrnchik, Senior Peer Health Coach Marc Yale, and a local member of the IPPF Board of Directors, Dr. Badri Rengarajan.
Before the meeting began, the room was buzzing with questions leading to an impromptu Q&A session. Many people took part, but the questions seemed to be answered by one woman. When Will introduced her, heads turned and the room gasped: IPPF Founder Janet Segall was in the audience.
Will told the audience about Janet and her work with the IPPF while she modestly smiled with a tear in her eye. All of us owe Janet a debt of gratitude for the work she did to bring pemphigus and pemphigoid to light and create an organization that flourishes thanks to her early care.
Afterwards, Dr. Marinkovich presented on the disease and treatments and opened the floor to questions while attendees enjoyed lunch. He could hardly eat his lunch because of so many questions, but he didn’t seem to mind at all.
The Bay Area Support Group has decided to meet quarterly on a Saturday around noon at the same Stanford Redwood City Clinics facility. Ten people volunteered to help with the 2013 Patient Conference, but we could always use more volunteers!
Thank you to Stanford University for donating the facilities, and to Will and Marc for their assistance in putting together this forum. And a special thank you to Dr. Marinkovich, Dr. Rigas, Susan, and Janet for their support and time.
If you are interested in more information about the Bay Area Support Group, or volunteering at the Patient Conference, email at
In April, 150 attendees gathered in the Big Apple for the 17th annual IPPF Patient Conference. Patients, caregivers, loved ones, physicians, and IPPF affiliated members gathered in the Davis Auditorium at Mount Sinai Hospital to hear pemphigus and pemphigoid (P/P) specialists from all over the country speak.
Annette Czernik, MD, Conference Co-Chair and Mount Sinai Hospital assistant professor and dermatologist, along with IPPF CEO Will Zrnchik, kicked off the conference with an exciting overview of the weekend’s events. The conference included guest presentations by scientists and clinicians; a speaker panel with a lively Q&A; a panel of patients at different stages of disease; 11 workshops on topics such as nutrition, oral care, and dealing with stress; and special guest talks by Mark Lebwohl, MD, professor and dermatologist at Mount Sinai and current president of the American Academy of Dermatology, as well as New York Congressman Charles Rangel.
IPPF Board President Badri Rengarajan, MD, provided attendees with an IPPF update. Dr. Rengarajan introduced staff and fellow board members. He also discussed plans for the coming year regarding Peer Health Coaches, Patient Education calls, clinical trials, fundraising, and further advances with the Awareness Campaign. Later in the day, a panel of the IPPF Board of Directors answered questions about finances, research, and the goals of the
Awareness Campaign Manager Kate Frantz spoke about the Campaign’s exciting developments, including the Awareness Ambassador Program, which trains volunteers to raise awareness among their local dental community. She highlighted the role that Patient Educators have played this past year in anticipation of the coming year’s plan to visit 19 dental schools to educate dental students and faculty about P/P. Kate also shared the recently developed Awareness Campaign website, brochures, and videos.
The conference then segued into introductions of P/P. Dr. Czernik gave an in-depth look at pemphigus while thoroughly explaining the basics of the disease. Jacob Levitt, MD, and Mount Sinai associate professor and dermatologist, took his turn at the podium to explain the essentials of pemphigoid. These talks have been favorites at past conferences, and the IPPF couldn’t have asked for more knowledgeable dermatologists to explain the “101” about the diseases.
Sergei Grando, MD, PhD, IPPF Conference Committee member, and University of California Irvine professpr and dermatologist, led a discussion on “Challenging Conventional Treatments.” Dr. Grando is a great friend to the IPPF and works with many P/P patients each year. He presented his thoughts on the ins-and-outs of steroids, immunosuppressants, Rituxan® (rituximab), and IVIG (intravenous immunoglobulin therapy), then focused on IVIG. Dr. Grando has immense experience in treating P/P patients with IVIG. He has seen many patients go into remission after using this treatment.
Rituximab is currently one of the most popular treatments among P/P patients, and there is always lively discussion at the patient conference of its use in treatment. Grant Anhalt, MD, professor and dermatologist at John Hopkins University, discussed the various protocols that can be used for P/P patients with this treatment, what patients can expect from it, the side effects they may experience, and more.
Neil Korman, MD, PhD, director of the Clinical Trials Unit of University Hospitals Case Medical Center and professor of dermatology at Case Western Reserve University School of Medicine, delivered three talks over the weekend. Dr. Korman’s first talk focused on emerging treatments and clinical trials. He guided the audience through current clinical trials that various pharmaceutical companies are administering. He explained which treatments are being tested, how they work, how they differ from current treatments, and what can be expected from the treatments and trials. Later, he went into greater detail about how clinical trials are administered, how the protocols are developed, and how recruitment is done.
At the Foundation, we work extensively with Animesh Sinha, MD, PhD, professor and dermatologist at the University at Buffalo. At each conference, Dr. Sinha and his team set up a blood draw station to collect blood samples for patients and their relatives for testing. Dr. Sinha took his turn at the podium to encourage audience members to donate blood to further his lab’s research on identifying genetic markers of P/P. Dr. Sinha also presented his team’s discovery of the HLA gene associated with PV. He explained the difficulties of determining the causes of P/P and finding proper treatments. You can read more about his group’s published findings in the Spring 2015 Quarterly “Research Highlights” column.
We also convened a panel consisting of Drs. Czernik, Grando, and Anhalt, which allowed conference attendees to ask a variety of questions.
The IPPF often focuses on patients, but we also understand the importance of caregiving and how caregivers need to be taken care of as well. Sheila Warnock, founder and president of SharetheCaregiving, Inc., discussed the importance of taking time for oneself, asking for help when one needs it, and other caregiver needs. She reminded the caregivers in the room how challenging their jobs can be at times, and that it is okay to struggle, but they should always make their own needs as much a priority as those of the patient.
Congressman Rangel gave a compelling speech on the importance of having a voice in politics and advocating for what you want and need. He encouraged the audience to fight for their rights and to be aware of the effect that Congress has on their health. He shared that change is created when individuals advocate for legislation that affects access to care and treatment. This extremely important to rare disease patients.
One of our most dedicated patient advocates at the IPPF is Marc Yale. He took the stage to motivate patients to be their own advocates. Marc gave examples of how advocacy can make a difference in patients’ health, especially when dealing with a rare disease, and how this will make a huge impact on future patients. Marc was empowering. Along with Hannah Heinzig, Carlos Campo, and Bryon Scott, Marc later shared his experiences of empowerment through advocacy. The Awareness Campaign team members each shared their journeys with P/P and how they have empowered themselves through raising awareness.
Dinesh Patel of BioFusion gave a presentation on navigating reimbursement for IVIG.
One of the most compelling discussions at the conference was a unique dialogue between Dr. Czernik and PV patient Esther Nelson. Dr. Czernik asked Esther questions about her PV, how she felt, what the diagnostic process was like, receiving treatments, and living with the disease. Esther very honestly and bravely shared her roller coaster of experiences in dealing with PV.
Finally, there was a very touching and powerful panel discussion during which a PV patient and board member, along with his father, mother, and sister, shared his story of diagnosis, severe disease activity, and travels to Maryland to see Dr. Anhalt for treatment.
To view presentations from the conference please go to
The 2016 Conference date and location have yet to be determined, but will be made available soon.
More people have climbed Mount Everest than have crossed the United States of America on foot. Noah Coughlan has just finished with his amazing third run across america. Noah started a coast-to-coast run February 28, 2015 in New York City, NY. He finished after 127 days, crossing 13 states, and running 3,000 miles. He was greeted by his family, friends, and hundreds of patients with rare diseases, as he ran into the water at Ocean Beach, California on the 4th of July 2015.

Finale Finish Line Flag Done

Noah had been running to rally support for the 30 million Americans affected by rare diseases. There are over 7,000 known rare diseases – affecting 1 out of every 10 Americans. Noah’s inspiration to run comes from his personal connection to two childhood friends battling a rare brain disease called Batten Disease. Noah’s efforts demonstrated that just one person can truly make a difference. During his “Run4Rare” he was interviewed by many media outlets, met with lawmakers, engaged patients and families, and rallied support for the scientists and researchers attempting to find cures for rare diseases.

Throughout his journey Noah dedicated his daily miles to a different child or adult battling a different rare disease. On May 29, 2016 he dedicated his run to Marc Yale and the entire pemphigus and pemphigoid community. He ran an average of 25 miles per day battling adverse weather conditions and physical exhaustion. Noah ran solo while pushing an 80 pound jogging stroller of supplies. Above his stroller waved a large American flag given to him by the United States Air Force. The American flag Noah ran with every day was officially retired in a moving ceremony at Ocean Beach, CA when he arrived on Independence Day.

Noah’s unwavering dedication to be the voice for the rare disease community by running across the U.S. three times was inspiring to many advocates. One patient stated at a reception, sponsored by the National Organization of Rare Disorders (NORD), following the transcontinental run, “that he created a bridge for all rare disease groups to work together.” The impact that Noah delivered during his “Run4Rare” was to show that every person matters. Noah’s message of hope for patients with rare diseases has reached the halls of congress and every community he passed through on his journey.  His passion and tenacity as an advocate should remind us all that we need to advocate for ourselves as well as the entire rare disease community.

Noah and Marc Hannah and Noah Marc, Woman, and Noah Noah



What would you say if you had 15 seconds to advocate for pemphigus and pemphigoid?

Would you tell them about the statistics? Would you talk about the person you know who is struggling with their disease? The sister or brother, friend or co-worker who struggles to find treatments and support? Or would you talk about your own diagnosis and how its existence has changed your world?

Global Genes is proud to launch the #15ForRARE Campaign—a social media video movement highlighting the individual voice in the rare community. Through participation in this campaign, #15ForRARE video activists (YOU!) are entered into a contest to win two sets of tickets to this year’s RARE Patient Advocacy Summit, and Tribute to Champions of Hope Gala. A Prize valued at $1,100. There will be two winners- each able to bring a guest.

Now is your time to speak up and tell the world why you “Care About RARE.” This movement is for patients, advocates, and industry alike. Through our individual voices we will unite and bring attention to a community that so deserves it.

Here’s how you get involved and get entered into our contest:Advocate for Rare

• Film yourself “selfie” style answering the prompt “I care about rare because…”
•Video must be no longer than 15 seconds
• Video must be uploaded to our contest entry form, found here.
• Video must be posted on at least one social media platform (Facebook,Twitter, Instagram, Youtube, Vimeo, Vine) with the hashtag #15ForRARE and#GlobalGenes (Don’t forget to use #healourskin too!)

And that’s it!

Each place you post your entry is an extra entry in the contest. The winner will be selected at random from the pool of applicants. Two winners will get two free entries to Global Genes annual RARE Patient Advocacy Summit and our Tribute to Champions of Hope Gala (airfare and accommodations not included, no cash prize offered). If you have already purchased tickets and win the contest, you will be reimbursed for their cost.

Global Genes will be using the videos submitted to us for cause marketing as well as will feature them at their RARE Patient Advocacy Summit!

My name is Todd Kuh and prior to December of 2010, I was a healthy, active person who had a passion for bicycle racing.  After being diagnosed in December of 2010, I was a Pemphigus patient and no longer an athlete.  My physician informed me shortly after my diagnosis that I would not race again.  He explained that physical and emotional stress must be carefully monitored and controlled from that moment on as stress could trigger the disease.  As I sat in the exam room I heard “Chronic disease”, “no known cure”, “painful”, and “potentially life threatening” and wondered how I would tolerate this new reality. 

On my way from the physician’s office that afternoon to the pharmacy to purchase my bag of medications (trying to figure out what just happened to my life), I decided to take one last bike ride.  As I rode that afternoon, still feeling strong from the countless hours of training, I suddenly realized that I would never feel this way again.

I always believed that I was blessed to be able to ride and race my bike and never took a single ride for granted.  Throughout my medical treatment, I leaned on friends, family and lessons learned from training and racing to provide me with the positive attitude I needed to overcome this disease.  Although I practiced a healthy lifestyle prior to diagnosis, I implemented a revised health and meditation program that would maximize the treatment I received.

After nearly three years of intensive treatment under the careful watch of Dr. Sergei Grando at the University of California, Irvine, School of Medicine, through healthy lifestyle choices and with the incredible support from friends and family, I’m in remission.

Dr. Grando again cautioned me of the factors that could contribute to relapse, which included physical stress.  He assured me that should I choose to return to training and bicycle racing, my remission would most certainly be brief.

I realized that a healthy lifestyle incorporates exercise, which of course would be moderate in my case.  With Dr. Grando’s approval, I began cycling again.  As the months passed and my fitness slowly began to return, I realized that I was capable of doing more than I or Dr. Grando believed I could.  However, I battled with the constant fear that my exercise program would trigger a relapse, which created unnecessary stress.

I connected with the IPPF and spoke with Victoria, a Pemphigus patient who told me about her running and physical activities.  We shared our stories and were surprised and encouraged to learn that we both successfully live moderately active lifestyles while in remission.  We agreed that exercise contributes to a variety of health benefits in addition to our sustained remission.   My conversation with Victoria simply changed my life and gave me confidence that I could live an active lifestyle, which further contributed to my emotional well being.  I’m certainly much slower and I don’t go very far, but I cherish every pedal stroke!

Once I realized that I was capable of a level of physical activity beyond what I previously expected, I began to experience the calming meditative qualities that exercise provides.  Simply, moderate exercise reduces stress.  While this is certainly not news to anyone, it’s critical for Pemphigus patients.

It was at this time that Victoria and I realized that a healthy program integrating sound nutritional choices, active stress reduction and moderate exercise would greatly benefit Pemphigus and Pemphigoid patients

Chasing Down Pemphigus and Pemphigoid is a program intended to provide hope and a new perspective to the patient community, raise funding for critical research studies, awareness and patient support programs while promoting active, healthy lifestyles as a critical part of disease management.

The Chasing Down Pemphigus & Pemphigoid program is an ongoing campaign that challenges every patient to make better nutrition choices, go for a walk each day, take a yoga class, meditate, take on a new hobby or do anything that improves our health, attitude and emotional well being.  Chasing Down Pemphigus & Pemphigoid is about proving that we can do more than what was thought possible.

The IPPF is a small non-profit foundation that provides important patient programming and support.  While Chasing Down Pemphigus & Pemphigoid is first and foremost a year-round program designed to motivate and support patients in their efforts to live healthy and active lifestyles, it is also a critical fund raising campaign that assists the IPPF in continuing to provide all of the support we all greatly appreciate.

Check your mailbox and your email box in the coming months for Chasing Down Pemphigus & Pemphigoid articles on nutrition, stress reduction, exercise, support and patient stories (including YOUR story!).  Can’t wait?  Then email me at: or Victoria at: to get going.

Dear pemphigus & pemphigoid community,

The House of Representatives is expected to vote on H.R. 6, the 21st Century Cures Act, the week of June 15th. The IPPF is urging our patient community to show its united support for this crucial legislation by contacting your representative today and ask them to co-sponsor H.R. 6, the 21st Century Cures Act.

This bill includes many provisions that could benefit our community and the rare disease community as whole including:

  • Billions in funding for the National Institutes of Health (NIH)
  • Hundreds of millions dollars in new funding for the Food & Drug Administration (FDA)
  • The OPEN ACT, which contains incentives that could double the number of rare disease treatments
  • The CURE ACT, that requires companies to publish expanded access policies
  • Patient focused drug development
  • It’s easy. Don’t wait! Go to this link to make your voice heard:

For those not familiar with an action alert here are some simple instructions:
1. Click on the link above
2. Fill in your street address & zip code and click “take action”
3. Fill in the rest of your personal information and a personal message (optional) about what 21st Century Cures means to you
4. Review your message and click “send”

For more information on 21st Century Cures you can go to:

For questions or if you are interested in getting involved in advocacy for the pemphigus & pemphigoid community, please contact Marc Yale

Preparing for your doctor’s appointment can help you get the most from your visit. Taking an active role in your care will make you an empowered patient. In addition, proactively learning about your disease will improve your healthcare and treatment experience. Collecting the information needed before a doctor’s appointment can ensure that you are organized and strengthen your doctor-patient relationship. Here are ten tips on how to prepare for the visit that will assist you in feeling better when you leave the doctor’s office.

1.      Have all your questions answered. Bring a checklist, and be ready to take notes

2.      Schedule enough time & bring your prescriptions

3.      Address priorities first & clarify concerns

4.      Remember to say “Thank You”

5.      Learn what tests are needed before the visit (if any)

6.      Have copies of your medical records

7.      Get a summary of your visit when you leave

8.      Fill out medical release to get your records

9.      Be patient

10.  Be confident and share your knowledge

Sometimes it is valuable to gain a second, third, or even fourth opinion when seeking a treatment for pemphigus and pemphigoid. Additional opinions also provide an opportunity for you to learn more about your condition and it can offer some peace of mind that you are approaching your disease with the best chance for a favorable outcome.

Remember, if you have questions don’t be afraid to “Ask a Coach” because when you need us we are in your corner!

In May 2015, Global Genes launched their 2nd annual Cox Prize for Rare Compassion contest which encourages 1st and 2nd year medical students to get to know a rare family and write an essay based on their experiences. If the medical student does not have a rare family to work with, Global Genes will match them with a rare family in their local area.

In just a few weeks, they have had requests from over 90 medical students for help in being matched with a rare family! These students represent dozens of medical schools all over the U.S. as well as Canada and the U.K.

Global Genes is asking our help in finding rare families we can match for this program. This is a wonderful way to create awareness for your disorder within the medical education community and possibly create a relationship that could shape the med student’s future career focus. The IPPF would love to have pemphigus and pemphigoid families represented in this fantastic program! What a great way to help spread awareness to the future of the medical community about pemphigus and pemphigoid! To let Global Genes know that you are interested in being a rare family for this program please email Carrie Ostrea

Please help us spread the word about their med student matching program by going to to see what locations are currently asking for requests. This list gets updated weekly, so please check back often to see what new cities are requested.

Thank you so much for your support! If you have any questions, please do not hesitate to ask.

Carrie Ostrea
Advocacy Director / Parent Advocate
Global Genes – Allies in Rare Disease
(949) 248-RARE x110

IPPF Awarded Abbey S. Meyer Leadership Award by NORD

Washington, D.C. – IPPF, International Pemphigus & Pemphigoid Foundation, was honored today at the Portraits of Courage gala event as the recipient of the prestigious Abbey S. Meyer Leadership Award by NORD (National Organization for Rare Disorders).

NORD hosts the Portraits of Courage Gala annually to bring together the rare disease community and to honor and celebrate the year’s outstanding achievements.  During the event, they recognize the individuals, organizations, advocates and companies that are moving the community forward in the fight against rare diseases.

The award was presented to the IPPF for the organization’s outstanding advocacy achievements on behalf of patients with rare diseases. The award, named for NORD’s founding president, is presented each year to a NORD Member Organization for demonstrating outstanding leadership and representation of its members.

We are proud to work with NORD and other member organizations to provide a voice for those living with rare diseases. Each year, NORD, a nonprofit organization that represents the 30 million Americans with rare diseases, hosts the Portraits of Courage celebration, to celebrate the pioneering achievements of individuals and organizations.

The IPPF is the pre-eminent global organization dedicated to improving the quality of life of all people diagnosed with, or affected by, pemphigus or pemphigoid.