Yearly Archives: 2007

With the goal of reducing pemphigus and pemphigoid diagnostic delays, the IPPF Awareness Campaign focuses its outreach efforts on specific areas of the dental community. Patient educators provide direct emotional appeals to students and faculty at some of the top dental schools in the United States. Since March 2014, patient educators have delivered 10 presentations at seven different schools, allowing them to reach over 900 students, faculty, and staff. With more guest lectures scheduled into 2016, the program is already an important part of achieving the Awareness Campaign’s goals.
Much of the early success of this program is due to the Patient Educators themselves: Becky Strong and Hannah Heinzig. Both nurses living with pemphigus vulgaris, Becky and Hannah are able to bridge the gap between educational knowledge of P/P and the personal connection of a patient’s experience.
The origin of the Patient Educator Program can be traced back to the 2010 IPPF Patient Conference in Philadelphia. Becky, whose search for a correct diagnosis spanned 17 months, five physicians, and several rounds of incorrect treatments, attended the conference as a newly diagnosed patient. She left inspired by Dr. David Sirois, who told patients that they had the opportunity to educate doctors. At her next appointment at the University of Michigan Department of Oral & Maxillofacial Surgery, Becky and her dentist discussed the idea of speaking to dental students about PV from a patient’s perspective. This discussion led to an invitation to speak to over 200 students at the University of Michigan. Becky wrote about her experience for the IPPF Quarterly, and the Patient Educator Program grew from there.
Hannah’s diagnosis journey included nine physicians, three years, and a misdiagnosis of leukemia. A new Patient Educator, she gave her first IPPF-sponsored lecture in March of this year. For Hannah, the lectures have been part of the healing process. “I could not wait to do something bigger than myself and help others in the process,” she said. “[The lectures] helped me to take that first step of the unknown and also regain control and normalcy.”
Becky expressed a similar sense of empowerment: “[It] feels great that little old me has the power to reach so many dentists . . . so I can help somebody else get a diagnosis and get treatment faster than I did.”
As nurses, Becky and Hannah had plenty of experience interacting with both healthcare professionals and the general public prior to becoming Patient Educators; however, addressing large classes of students and faculty was new. Hannah said she was terrified when IPPF Awareness Campaign Manager Kate Frantz asked her to share her story. “I never wanted to be a public speaker, and that is exactly what I am doing. I have to say it has been one of the most rewarding things I have ever done and, believe it or not, very addicting.”
“Speaking in public isn’t always easy,” Becky said, “but it is always worth sharing your story. You never know who you might inspire.”
Both Becky and Hannah have been surprised and encouraged by the emotional response to their presentations. “I was praying that I wouldn’t put them to sleep,” Hannah said. “Instead, I have looked into a room full of compassionate eyes and smiling and tearful faces while pouring out my own story.”
“It’s the emotional way that I tell the story that gets students to connect with me,” Becky said. “Many times, students cry and laugh during my lectures, and many have told my husband how brave we both are for sharing our story.”
The IPPF Awareness Campaign is lucky to have such inspired Patient Educators at the heart of the program. The overwhelmingly positive reactions from both students and faculty underscores the impact patients have in raising awareness about P/P.
“I want to encourage everyone to get involved,” Hannah said. “It truly helps you heal when you help others. It doesn’t have to be big or small. Find what makes you passionate . . . and incorporate it into helping spread awareness.”
Though the Patient Educator Program is one of the “big” ways to get involved, the IPPF also has opportunities that require less of a commitment. The Awareness Ambassador Program trains people to raise awareness in their own communities and can be tailored to fit individual skill sets and comfort levels. More information can be found on the Awareness Campaign website: pemphigus.org/awareness. ippf
Dear IPPF community:

After seven years on the IPPF Board of Directors with two and a half years in the role of president, it will be time for me to step down this summer. I am very pleased with how the Foundation has grown and improved in the last two and a half years. We have improved our finances, tightened operations, and introduced new programs and initiatives. The latter includes, among others, launching an awareness campaign, establishing interactions and programs with biopharmaceutical companies, creating a multitiered volunteer program, and establishing an endowment fund. The Foundation is in a better position now than when I took on the role of president.
As I have done several times in the last few years, I once again want to encourage members of our community to get involved in Foundation activities. Your expertise, time, and professional and personal networks will enable the Foundation to better serve our patients. We can create roles with responsibilities and time commitments that fit each individual’s interests, capabilities, and time constraints. Volunteering is a great way for new patients to accelerate their learning and be in a better position to take charge of their lives. It is also a great way for patients in remission to serve as models for our new patients. Please contact the Foundation and explore how you can contribute. Please do get involved.
I want to thank my Board colleagues, medical advisors, and CEO and staff. It has been a pleasure to work with you in advancing the Foundation. I want to also thank our patients and caregivers. Your courage and persistence are inspiring. It has been an honor to work with you.
I will still be involved with the Foundation in a volunteer capacity, likely in the area of research and development, a topic of great interest to me. I look forward to watching the IPPF continue on its upward trajectory.
Best wishes to everyone.

Best,
Badri

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
Foundation.
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 pemphigus.org/get-involved/
patient-conferences-annual-meetings/.
The 2016 Conference date and location have yet to be determined, but will be made available soon.
Summer’s here and with the warm weather comes good news! A generous member of our community has issued a challenge: they will match all “new” dollars 100% up to $100,000! If you haven’t donated to the IPPF before, now is a great time to double the impact of your gift. If you donated in 2014, your 2015 gift needs to exceed that amount and the difference will be matched. If you donated this year before April 24, 2015, any additional gift you make should qualify for the match.
Read more at pemphig.us/100kchallenge_rules. You can contact Monique Rivera at (855) 4PEMPHIGUS (855.473.6744) or monique@pemphigus.org and she will be glad to assist you.
The Patient Conference in New York was a resounding success! I want to thank Dr. Annette Czernik from Mount Sinai for hosting our event. The weekend was a great time – from Friday night at Yankee Stadium sponsored by Biofusion, to Saturday’s lectures and workshops, to Sunday’s panel discussions, this was the most patient-focused conference to date. An astounding 97% of attendees said they would share conference information with their physician, and 95% said the information will improve their quality of life. Read more about this fantastic event starting on page 4, see the pictures on pages 10-11, and if you who missed the Yankees-Mets game, you can read about it on page 12.
The Awareness Campaign is making HUGE strides towards increasing P/P awareness and reducing diagnostic delays. Meet two of our Patient Educators on page 6. Dr. Terry Wolinsky McDonald has tips to keep in mind when a patient becomes the caregiver (p. 7). Michelle Atallah explains desmogleins and the role they play in P/P (p. 8). IPPF founder Janet Segall reminisces and honors the passing of our friend and P/P advocate, Siri Lowe (p. 9).
Tammy, a pemphigus vegetans patient, says the day she was diagnosed was the happiest day in her life. Find out why on page 13. Dr. Ani Sinha has collected blood samples for many years. Learn how this advances research (p. 14). If you have a P/P friendly recipe, Daphna Smolka is putting together a Cookbook (p. 16).
In closing, I would like to thank my friend and colleague, IPPF President Dr. Badri Rengarajan, for his years of dedication to the IPPF. After seven impactful years, Dr. Rengarajan is stepping down from the IPPF Board of Directors (see p. 5). In keeping with his goal to increase community engagement, he will continue to support the Foundation as a volunteer.
On behalf of the staff, coaches, medical advisers, and Board members:
Badri, thank you for leading the IPPF to a new heights and positioning us for the future. ippf
This article is meant for those of you who have recently or about to move to a new area. After living in the greater Seattle area for 58 years, I moved to the San Francisco Bay area in August ‘14.

I encountered more challenges that I had expected. I had to find new medical insurance, since the company that I was with in WA isn’t licensed to cover in California. I also had to find a new dermatologist and general practitioner.
First, I had to decide on what kind of insurance to get. In WA I was with a company for around four years. They were much like Kaiser in the west. You can only go to Kaiser providers, labs and prescription services. I was used to this system, however it felt restrictive. The other option was to pick an insurance company that was a PPO.

Finding a GP was probably the hardest, in the sense that I felt a bit like I was shooting in the dark. My insurance agent unofficially suggested I look for a doctor within the John Muir system. They are close, and generally good. It was much easier to find a dermatologist, because I already knew who I wanted. When moving though you should always contact the IPPF and have them re-send you the physician’s referral list. This way you can see the doctors in your new area.

I was familiar with Dr. Peter Marinkovich at Stanford Medical Center. He is on the medical advisory with the IPPF and I have heard him speak before. I felt great about working with him, and his staff. It’s over an hour drive away from me, but worth it.
I have a few suggestions to keep in mind. If you are moving due to a job change, or your spouse’s, then I believe you are more restricted if you don’t want to self-pay. Read up on what kind of choices you have for a dermatologist in your area. Talk to your insurance company’s customer service if you have any questions regarding coverages. Find out how much experience the dermatologist has treating pemphigus/pemphigoid. In addition to that, it’s important to be able to feel connected, and your doctor understands you.
If you need help finding a dermatologist, feel free to contact Noelle Madsen at the IPPF office. She can make some recommendations, as well as send you a list we have. She can be reached by phone at 916-922-1288 x105 or by email at noelle@pemphigus.org.
Remember, when you need us we are in your corner!

Having a rare disease like pemphigus or pemphigoid can make you feel like you have lost control of your life. After being diagnosed you may experience fear, confusion, and you may feel unclear about your future. You may even feel helpless, vulnerable, and at the mercy of others. Your self- esteem may be compromised along with your immune system. The anxiety or stress that can bring may be overwhelming. The good news is that these feelings are normal and more importantly that you truly do have the power to stay in control!

Here are a few tips on how to keep calm and stay in control:

1.      Offer help to others – this will help you keep your disease in perspective

2.      Find the “silver-lining,” in every situation – there is always something positive to gain

3.      Respect and accept that you can’t control everything – the sooner you realize this, the better!

4.      Don’t be a victim, be a contender!

5.      Be proud of yourself – every day is a step in the right direction

6.      Learn about your disease – knowledge is power

7.      Be self-determined – you are the master of your fate

8.      Speak up for yourself – being heard builds affirmation

9.      Consider how your disease will help you grow as an individual

10.  Don’t be afraid to ask for help and support!

You are not in this alone and there are many patients that are experiencing the struggles that you are going through. If you reach out to others through the IPPF you will find that you really are in control and together with other patients like you we have the power to overcome this disease.

Not sure how to connect with others?  Just “Ask a Coach!” Remember, when you need us, we are in your corner!

Living with a bullous skin disease is a challenge in more ways than one.  In addition to taking medication we also need to be taking supplements, avoid certain foods and spices, take caution in how we move and bathe, and relax to reduce stress.

We also need to take extra precautions against the sun’s harmful rays…more so than the average person who does not have pemphigus or pemphigoid.

It isn’t always a sunny day that can bring the harmful rays.  Cloudy days can be deceiving – you can get your worst sunburns through the clouds.  Reflections from the water in swimming pools, lakes, oceans, etc. increase the harmful effects of the sun’s rays as well as the reflections from the snow when skiing.

Women also need to make sure that their foundation has an SPF ingredient – this was told to me by the national makeup advisor for Dior.  I never knew this!  But it does help…even if we don’t actively stay out in the sun and are just running around doing errands.

According to the American Academy of Dermatology:

“Dermatologists recommend using a sunscreen with an SPF block of at least 30, which blocks 97% of the sun’s rays.  Just make sure it offers a broad-spectrum (UVA and UVB) protection, an SPF of 30 or greater, and is water resistant.”

Before trying to figure out which brand is the best to buy, discuss with your dermatologist. He/she can make suggestions for you based on your skin’s level of activity.

Don’t forget your ears, too!  Ear lobes are very sensitive and need protection. For those of you with scalp involvement, it is best to consult with your dermatologist who will recommend what sunscreen products are best for the scalp.  Hats are advisable when venturing outside.  Solid hats…not straw as the sun’s rays will stream through the weaves and cause damage!  Take extra care with the “driver’s arm” — you know, your arm that is exposed to the sun when you’re driving?  The sun’s rays are intensified through the glass windows. Best to be sure you are either wearing long sleeves or extra sunscreen.  If you are going in the water, sunscreen needs to be reapplied often.

UV radiation also impairs the skin’s immune system in alarming ways. Sun exposure reduces the number of watchdog cells that help recognize and respond to antigens, and alters their function so they are as effective as dozing prison guards. “This effect on immune suppression can set in even before a sunburn,” Dr. Baron said. Reference: http://www.nytimes.com/2009/05/14/fashion/14SKIN.html?pagewanted=all&_r=0

Remember, when you need us we are always in your corner!

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

Studies have shown that there is a mind-body connection.  It is known that stress can cause headaches, muscle aches, tummy aches, and blisters!   For those affected by pemphigus and pemphigoid (P/P), when your stress levels are high, the antibodies know when it is time to come out and play.  Horrors!  It is easier said than done to remain calm and stress-free.

Have you experienced when you have a headache and you worry more about something and the headache gets worse?  That is an example of the mind-body connection.

The brain signals the immune system, and we never know until after it happens.  In order to ward off these signals, it is important for patients to remain even-minded.  HA!  You say!  You’re right!  However, there are ways for us to get better at this.  It just takes practice.

Meditation can be very helpful.  Even if only for 5 minutes at a time.  Never feel that you must sit in a lotus position and keep stiff for an hour!  That is not what meditation is about!

There are a lot of meditation videos on YouTube that you could take a look at.  Just type in the word “Meditation” and a lot of suggestions come up!

Breathing exercises are a great way to help keep your blood pressure down. They help to bring a sense of calmness to envelope you.  Essentially, you are inhaling slowly to a count of 10 or 20 and holding the breath for 10 or 20 and then exhaling slowly for 10 or 20.  When you exhale, think of a happy word (like an affirmation) ie: joy or peace.

Deciding whether you should continue working or go on Social Security Disability is a tough decision. It can add to your stress level and worsen your disease activity. Before you rush into any decisions you should take inventory of how you are feeling physically, emotionally, and spiritually. Your job or career can have a significant impact on these aspects of your health. It’s important to understand how your job is affecting you. If you feel like you need to be on disability you should consider the following:

  • Will you be on long-term or short-term disability?
  • How will it affect your recovery and ability to reach remission?
  • How will it affect your insurance coverage and drug costs?
  • How will affect you financially?

Once you have decided, contact your physician and let them know that you need their assistance in the process. Your physician will need to provide information that confirms that your condition is severe and that you can’t do the work you previously did due to your condition. Apply immediately at www.ssa.gov so you can start the process.

Both you and your physician will receive a health questionnaire about your condition. Make sure that you and your doctor list all impairments that prevent you from working including medication side effects. Be aware that an interview may be held to determine your health condition. Keep copies of all your paperwork, health records, and track your conversations. Get to know your case worker as they will have influence in the decision process.

In many cases Social Security Disability claims can be denied the first time. Don’t let this discourage you! You can always file an appeal with additional medical information that can substantiate your claim. The IPPF can also help provide information about the disease that may help educate individuals regarding the severity of the disease.

Bullous Skin Disorders are included under listed impairments and in many cases Quick Disability Determinations (QDD) can be made depending on the severity of your disease. Receiving benefits, like your disease, take time so the sooner you apply the better! Although the process may seem daunting, your health may depend on advocating for yourself.

Don’t be afraid to contact the IPPF if you have a question or just “Ask a Coach”! Remember, when you need us, we’re in your corner!