Events

The first Rare Disease Day was first launched in Europe by EURORDIS, The Voice of Rare Disease Patients in Europe, and its Council of National Alliances in 2008. The USA joined the cause in 2009. By 2016, Rare Disease Day has become a worldwide event with over 80 countries participating.

Rare Disease Day is a pretty cool thing for those of us with rare diseases. According to the National Organization for Rare Disorders (NORD):

“Rare diseases are not so rare: there are 7,000 rare diseases & disorders that combined affect 30 million Americans–1 in 10 of us–and more than half are children.

People with rare diseases have tremendous unmet needs, including misdiagnosis, a long time to finally receive a correct diagnosis, and when they do, 95% have no treatment with ZERO CURES.

Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives.”

This year’s global theme is research. It is our chance to give lawmakers, industry leaders, researchers, and healthcare professionals a glimpse of the impact a rare disease and its treatments may have. It is a local, national, and international awareness event.

Rare Disease Day is a day of unity for us patients. I can’t speak for you, but I felt very alone and isolated when I found out I had pemphigus vulgaris. Then I found community in the IPPF. It was very comforting to know there were others out there who had gone through what I was living through. Now imagine being with hundreds of others who have a variety of rare diseases. Like us, they are patients looking not only for effective treatments, but also cures. On Rare Disease Day, we are a united front advocating for increased funding for research. It’s a time of inclusion. A time for uniting as one. A time to make a difference.

It’s also a time to network with other patients and learn about their diseases, how those diseases affect them, and what their disease organizations do to support their needs. It’s a way to find out what we – as members of the IPPF – can do better to help and support all who are affected by rare diseases. It is a time to find community and strength in knowing that we are not alone in a search for better treatments and cures.

Rare Disease Day is a day to find strength and power in your weakness, your disease. You have the power to share your story. Your story has the power to impact the leaders of your city, state, and country. Your story can evoke changes in law, government, healthcare, and medical education.

I encourage you to look for opportunities where you can get involved. If no opportunity exists near you, you can create your own. You could share your story with co-workers or local government officials, organize a bake-sale and donate the proceeds to the IPPF, or organize a run/walk to raise awareness. The list of possibilities is endless. Just be sure to explain what pemphigus and pemphigoid are and refer people to the IPPF if they have questions.

To learn more about Rare Disease Day and Rare Disease Week events, visit http://www.rarediseaseday.org/ and http://rarediseaseday.us/.

Wow! The 2016 Patient Conference has already come and gone. It was an amazing experience for attendees and presenters alike. This year’s event focused on the importance of peer support and expert research, and there was a special emphasis on oral care. The conference was full of learning, laughs, and the formation of life-changing bonds.

The Hilton Garden Inn Downtown Austin is located close to some of the best food and entertainment in the city. Austin’s 6th Street has been a famous entertainment hub since the 1970s. It’s home to South By Southwest — Austin’s famous music and film festival — as well as the Pecan Street Festival, which attendees got to catch a bit of after the conference. The street itself is closed to vehicle traffic on Friday and Saturday nights and becomes a pedestrian paradise filled with lights, music, and bustling people.

Terry Rees, DDS, MSD, Director of the Stomatology Center at Texas A&M University College of Dentistry, and I started the conference by giving a joint continuing education presentation to local dentists and patient attendees on pemphigus and pemphigoid (P/P) and the reason why early diagnosis is so important. Dr. Rees covered the academic content of managing patient care, while I gave a personal testimony of my journey to obtain a diagnosis. Together, we presented the whole picture of diagnosing, treating, and living with an autoimmune blistering disease.

Thursday night’s Cocktail Hour, Awards Dinner, and Casino Night were all held at Eighteenth Over Austin — a beautiful venue with 180 degree views of the city skyline. Aimee Payne, MD, PhD, Associate Director of the Medical Scientist Training Program at the University of Pennsylvania, gave the keynote speech. This included an exciting glimpse into the potential breakthroughs of her current research. The IPPF Awards Dinner recognized many people who have worked hard, both in front of and behind the scenes, at the Foundation.

At Casino Night, patients, doctors, and researchers alike tried their hand at games of skill and luck to see who could gather the most chips by the end of the night. Marc Yale, IPPF Executive Director, served as MC, calling out the numbers of winning raffle tickets. Prizes included a Samsung Galaxy Tablet, FitBits®, Sonicare™ electric toothbrushes, Waterpik® flossers, and more!

Friday began with opening remarks from Dr. Rees and Marc Yale. Todd Kuh, IPPF Board Chairman, introduced the Board of Directors and staff.

Sergei Grando, MD, PhD, and a leading P/P expert from UC Irvine, gave a lecture on IVIG. Next, Victoria Werth, MD, Professor of Dermatology and Medicine at the University of Pennsylvania, and Member of the IPPF’s Medical Advisory Board, spoke of the treatments that are commonly used to treat our diseases. She covered why steroids and immunosuppressants work to treat P/P, as well as how they work. Dr. Werth also covered many of the side effects and complications that come with using such strong medications.

Kim Yancey, MD, Professor and Chair of the Department of Dermatology at the University of Texas Southwestern Medical Center in Dallas, covered the use of topical treatments in the care of patients with ocular, nasal, and oral disease involvement. He stressed the importance of regular checkups with eye doctors, dentists, and ENT doctors, as well as the role of dermatologists in managing lesions.

These lectures were followed by a Q&A session where patients and caregivers were given the chance to ask questions that were not answered in the lectures. Sessions like these give patients power over their diseases because they give them a chance to have an active dialog with experts.

After a short break, Animesh Sinha, MD, PhD, professor and dermatologist at SUNY Buffalo, gave a lecture on genetics. He explained certain genetic characteristics that most P/P patients share with one another and how blood samples collected at the IPPF’s Patient Conferences over the years have helped him in his research.

Dr. Rees participated in an oral care panel with Nancy Burkhart, RDH, EdD, adjunct associate professor at Texas A&M College of Dentistry and member of the IPPF Dental Advisory Council; Paul Edwards, MSc, DDS, FRCD(C), professor at Indiana University and member of the IPPF Awareness Committee and Dental Advisory Council; and Michaell Huber, DDS, professor at the University of Texas HSC San Antonio. This panel gave the patients a chance to ask questions that would help them improve their overall oral health. Topics covered included mouth rinses, brushing techniques, and the best kinds of toothbrushes for P/P patients.

After lunch, participants had the opportunity to choose from different breakout sessions.

The first group of sessions included topics as diverse as “below the belt with A. Razzaque Ahmed, MD; clinical trials with Diana Chen, MD, MBA, FAAD; disease­-specific patient reported outcomes with Badri Rengarajan, MD; and ophthalmology with Dennis Kay, MD.

The next group included a sessions on insurance from BioFusion’s Dinesh Patel, IVIG from Dr. Ahmed, oral care from Dr. Rees and Dr. Burkhart, and Rituximab and next generation therapies from Dr. Payne.

The final breakout sessions featured Dr. Payne’s lecture, “Future Targeted Therapy of Pemphigus,” as well as ”Mindfulness Based & Positive Psychology with P/P” by Terry Wolinsky-McDonald, PhD; Dr. Ahmed’s “Pemphigoid Q&A”; and Dr. Sinha’s “Pemphigus Q&A.”

The day ended with Dr. Kay, Dr. Ahmed, Dr. Sinha, and Dr. Payne sitting for a Q&A session, followed by cocktails and cupcakes. Many attendees then made their way out to explore the best that downtown Austin had to offer.

Saturday was a day for patients by patients. The morning started with breakfast and another opportunity to bond with fellow patients. Camaraderie is so important with P/P. Our diseases can be isolating, and it was awesome to meet others who have walked the same path, many of whom are well on their way to remission.

Mei Ling Moore started the morning sessions with a guided meditation and de-stressing presentation, helping us all to be open to the day ahead.

Next, Valhalla Holeman led us through the emotional story of her son Laten’s struggle with pemphigus foliaceus. There were not many dry eyes during the presentation. Laten’s quiet strength — along with the support of his sister and brother, Myles and Coale, sitting next to him — was truly inspirational.

IPPF Peer Health Coaches Mei Ling Moore and Janet Segall, IPPF Board Member Dave Baron, and I led a patient-to-patient panel. There were so many good questions and comments, and it really seemed to bond our community more tightly together once again.

Roy Vongtama, MD, reinforced the mind-body connection in his lecture. He explained how we might not have control over the stressors in our lives, but we do have control over how they affect us. Dr. Vongtama then showed how posture, breathing, and meditation affect overall health.

IPPF Awareness Ambassador Coordinator Bryon Scott discussed the Awareness Ambassador program and simple ways we can all spread awareness in our networks and with our own dentist. Anyone interested in getting involved should email
ambassadors@pemphigus.org.

Marc Yale then spoke of the work he is doing to advocate at the state and federal level. Marc is a true gem to the foundation. He has lobbied for Rare Disease Day in California and has stormed Capitol Hill with the National Organization on Rare Disorders and the American Academy of Dermatology. Marc broke down barriers and empowered everybody in the room. He made us aware that we, as patients, have the power to change laws in this country. It was truly inspiring.

Todd Kuh then gave a lecture on his “Chasing Down Pemphigus” fundraiser. Todd shared the story of how he felt after being diagnosed with PV and how a single conversation inspired him to regain the active lifestyle he led before his diagnosis.

After Todd, it was my turn to present “The Power of You.” There was a time when I felt I had lost my voice to PV, the treatments, and the side-effects of the medication. But somebody told me that patients are the true experts because we live with the disease. That inspired me to find my voice again, and my presentation focused on the ways we can all be advocates and share our expertise.

After the final presentations, Dr. Rees and Marc gave their closing remarks and hopes for all P/P patients. Everybody was touched. After two days of intensive and inspiring lectures, attendees left feeling united. It felt like we mattered. Doctors cared about the plights of patients like us. Patients felt like they had renewed hope. Some reinforced old friendships from past conferences, while others forged new relationships. I’m looking forward to what the IPPF has to offer in 2017!

The term stress as it is used today was coined by Hans Selye in 1936, who defined it as “the nonspecific response of the body to any demand for change,” which means that when our senses notice any physical or emotional change, our body will respond in either a positive or negative way. If the changes are persistently negative, the outcomes have been noted to cause physical problems such as heart disease, strokes, and even autoimmune disease.

For pemphigus and pemphigoid patients, there are several events that can trigger stress and exacerbate disease activity, even simply being diagnosed with a rare disease. The time it takes to be diagnosed, the medication itself, and how it all affects our families and friends can trigger stress and depression. So the question then becomes “What can we do to normalize our responses to all these stimuli so we can decrease stress, change the course of depression and in turn maybe reduce disease activities?”

Sometimes the answer is medication. If the depression takes over, using medication for a short or long term might be necessary to get back to a calmer, less stressful place. But if the idea of medication doesn’t work for you, there are several other choices to help alleviate both stress and depression.

Therapy

Sometimes just having someone outside your circle of friends and family can make a huge difference in helping to see life differently. One of the most respected tools in therapy is called Cognitive Behavior Therapy (CBT). This type of therapy can help you learn how to deal with your thoughts and can take control of how you interpret and deal with certain stressors. Along with CBT, there is Dialectical Behavior Therapy (DBT) which helps to change negative thinking patterns and work for a more positive change in thinking.

Meditation

Meditation is an effective tool for giving the body and mind a chance to rest. It can possibly help with anxiety, high blood pressure, weight control, and sleep. There are several ways for a person to experience meditation. Prayer is a form of meditation, as is repeating a phrase (a Mantra) as they do in Transcendental Meditation, or practicing mindfulness – being in the here and now.

Hypnotherapy

Hypnotherapy starts with placing a person in a meditative state and uses different tools to bring in positive thoughts through affirmations. When a person is in a hypnotic state the mind becomes open to positive suggestions that can be retained and remembered. It is a myth that someone using hypnosis can be influenced to do things they would never do. In reality a person would never do anything against their beliefs. The person is always aware of the process while it is happening.

Acupuncture

Acupuncture is a great way to relieve stress which in turn can help relieve depression. Acupuncture uses specific types of needles in a quiet, relaxing environment. This type of stress reduction was developed in China over 2500 years ago and is still relevant today. Acupuncture has also been shown to help after surgeries and chemotherapy.

Diet

Healthy eating has also been attributed to helping a person relieve stress and depression and has anecdotally helped with lessening disease activity. Certain foods have been known to make a person feel good for a few moments, but then that good feeling goes away quickly, possibly causing depression. Often the medication for our disease contributes to increased appetite, but being aware and finding other methods to help reduce the cravings can be very beneficial.

These are just some of the ways to help reduce stress and in turn help reduce depression. Each individual has their own way of living with and dealing with stress, depression, and how that might affect disease. 

Although there has been a huge public outcry over the cost of prescription drugs, there has been little public discussion about the need for innovation for patients who don’t yet have an effective therapy. It is estimated that 1 in 10 Americans suffer from a rare disease, and only 5% of rare diseases have a treatment approved by the Food and Drug Administration (FDA).

However, the toll of rare diseases goes beyond patients, with potentially devastating impacts on families and other loved ones. The average pemphigus and pemphigoid patient sees 5 doctors over 10 months in search of a diagnosis, often delaying the start of treatment. Many rare disease patients wait an average of seven years before getting an accurate diagnosis. Even if a patient obtains an accurate diagnosis, chances are there are no FDA-approved treatment options. The small size of patient populations makes the massive investment needed for lengthy research and development needed to create rare disease therapies unattractive to most pharmaceutical companies.

I was diagnosed in 2007 with cicatricial pemphigoid, a rare autoimmune blistering skin disease. Like others with a rare disease, I experienced delays in diagnosis and difficulty finding knowledgeable physicians. Eventually, I lost vision in one eye from the disease. The pain associated with my disease was severe, and the list of complications extensive. Although my disease can be treated, there are still no FDA approved treatments and no cure. No disease should be too rare for a cure.

The good news is that Congress can do something to help. The 21st Century Cures Act, which passed the House of Representatives with broad bipartisan support (a rarity in the current political environment), could provide billions in new funding for research at the National Institutes of Health, the nation’s premier biomedical research institution, along with needed funding to enhance the review of new medicines by FDA. What’s more, the legislation has crucial incentives, such as the Priority Review Voucher program to encourage the private sector to invest in developing new, life-saving therapies for pediatric patients, and the OPEN ACT, which would encourage companies to repurpose existing medicines for rare diseases like ours. This could potentially bring hundreds of new treatments to patients more quickly than traditional drug development. In short, this bill could be a game-changer for patients with both rare and common diseases.

But Congress has been debating this legislation for nearly two years and has yet to send it to the President’s desk for signature. If Congress fails to reach an agreement by the end of the year, all of the work on this legislation and the hope that it represents to patients will be lost. Every day, patients are losing ground to diseases and continue to go undiagnosed or untreated.

The IPPF urges you to contact your representatives and senators today to prioritize the 21st Century Cures Act on behalf of pemphigus and pemphigoid patients and their families across the country. Time is running out. and we cannot afford to wait any longer.

“I truly felt that our representatives were listening closely when I told them my story of being diagnosed with and treated for pemphigus vulgaris.” On Thursday, September 22, I joined 350 advocates on Capitol Hill for the Rally for Medical Research. Our main goal was to encourage members of Congress to continue robust, sustained, and predictable funding for the National Institutes of Health (NIH). Because I live in Washington, DC, a city without a vote in Congress, I was assigned to the group from Montana.

Along with a University of Montana biologist and a cancer research advocate, I met with Sens. Jon Tester and Steve Daines, and Rep. Ryan Zinke. All three members were supportive of our efforts to maintain NIH funding, especially Sen. Tester, who seemed to have a vested interest in medical research. In addition to our general request for NIH funding, I stressed the importance of cutting edge research on rare diseases and emphasized the significance of the Open Act, which incentivizes pharmaceutical companies to make treatments available off-label.

Of my three visits to Capitol Hill as a rare disease advocate, this is the first time I met with the members themselves rather than only their staff. It was a humbling experience but also a powerful one. I truly felt that our representatives were listening closely when I told them my story of being diagnosed with and treated for pemphigus vulgaris. Meeting our lawmakers in person and telling our stories makes all the difference!

In the beginning of treating a bullous skin disease like pemphigus, prednisone is usually prescribed.  A high dosage over time, can be tapered down. While we are thrilled that the dosage is being lowered, the side effects of tapering can be debilitating.

It is safer to decrease the dosage by no more than 5mg per week. Tapering too quickly can either cause a flare-up or have you feeling like your muscles are rebelling.

If you abruptly stop taking prednisone or taper off too quickly, you might experience prednisone withdrawal symptoms: A gradual reduction in prednisone dosage gives your adrenal glands time to resume their normal function.

(1) http://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

Essentially this is a drug that mimics your body’s natural hormones produced from the adrenal glands. When prescribed in significant doses, Prednisone works to help suppress inflammation. In the event that a person’s immune system is attacking its own tissues (as is the case with autoimmune diseases), this drug can help reduce activity by suppressing immune system functioning. It affects the “HPA” or hypothalamus-pituitary-adrenal axis when taken longer than 7 days.

Side effects can include the following:  Abdominal pain, anxiety, body aches, decreased appetite, depression, dizziness, fatigue, fever, joint pain, mood swings, muscle soreness, nausea, weakness.  Not everyone experiences the same side effects, but these are the most common.

Taking an OTC (Over The Counter) pain relief can be helpful as well as taking in more salt and sugar that helps with low blood pressure and blood sugar.

(2) http://mentalhealthdaily.com/2014/06/10/prednisone-withdrawal-symptoms-how-long-do-they-last/

The body needs to keep moving although body aches can make you feel as if you don’t want to move!  What you can do is take walks at a leisurely pace until you are comfortable enough to step up the pace to a brisk walk.  Stretching every day is essential to keep your muscles flexible. Hurts,

But do what you can.  The price of being motionless is worse

if you don’t.  Your muscles will tighten and you’ll lose mobility.  A beginners yoga DVD can help you move in the beginning. Exercises in a pool help because the weight of the water pushes against you gently and cushions movement.

Meditation can help to sooth the nerves…keeping calm is very important anyway but especially when tapering because you more anxious than ever.  Listening to meditation music (Youtube if don’t have any) helps.  Talking to family members and closest friends helps too as they will understand if you seem moody or nervous.  The more you communicate, the more they can empathize and realize you need patience and humor from them!  Yes, laughter helps!

If you find that you are still having difficulty with body aches and pains and muscle weakness, consider asking your dermatologist for a referral for physical therapy.  Six visits are all you need to help you with exercises to keep you in motion and help you to get to feel better.

Remember, when you need us we will be in your corner!

You have heard this message time and time again: It’s important for family caregivers to take care of their own health so they can stay strong enough to take care of their loved ones! But as a family caregiver, it’s difficult to find the time because caregiving takes so much work and energy. Being a family caregiver can be like having another full-time job.

Research confirms what we all know – caregiving is stressful. It challenges caregivers physically and emotionally. No one can expend their time, energy, and strength caring for someone else without having to replenish their own reserves. Sooner or later, something has to give. Over time, caregiving takes a toll on body and mind; on personal finances, family relationships, and work life. It can erode the immune system and actually increase susceptibility to illness.

Two out of every five adults provide care for a chronically ill, disabled or aged family member or friend. They typically spend 20 hours per week providing care for their loved one, and 13% are providing 40 hours of care a week or more. And for six in ten family caregivers, this is in addition to already working a full- or part-time job!

Family caregivers face many challenges. Caregivers have a higher incidence of major health conditions (such as depression, hypertension, and diabetes) than non-caregivers – directly as a result of the stress from their caregiving challenges. And ignoring their own health (sleeping, eating, exercising, visiting a doctor) further undermines caregivers’ health. There are many indications that caregivers are at risk of burning out such as feelings of anger, anxiety, depression, or fatigue. Seeking help is the most important step, but admittedly it is not always easy. Thankfully, there are tips and tools available to help avoid burnout and maintain some sense of balance in your life while caregiving!

Washington, DC-based Caregiver Action Network works tirelessly to advance resourcefulness and respect for family caregivers across the country. CAN’s free educational resources assist in learning to develop effective caregiving coping skills. CAN has tips and tools that can help caregivers avoid burnout and stay healthy themselves while caring for their loved ones.

CAN Recommends that Caregivers:

  • Seek support from family and friends.
  • Accept offers of help and suggest specific things people can do to help.
  • Learn how to communicate effectively with doctors.
  • Take respite breaks often.
  • Watch out for signs of depression and don’t delay in getting professional help when they need it.

Connecting caregivers to one another is also vitally important because caregivers need to know that they are not alone. CAN maintains the Family Caregiver Forum so caregivers can connect and help each other. This online forum is a safe place where any caregiver can ask a question of others dealing with similar circumstances and get thoughtful and helpful responses.

Nothing is as important to avoiding burnout as “respite” – the chance to take a breather, the opportunity to re-energize. It is as critical as any other item on a caregiver’s to-do list. Respite is the key to your own well-being. Respite protects your own health, strengthens family relationships, and allows loved ones to stay at home up to three times longer. It should come as no surprise that respite is one of the most frequently requested support services for family caregivers. There are seven essential elements of respite, easily remembered by the acronym “RESPITE

“R” is for “Rest and Relaxation.” Everyone needs a little “R and R” – especially family caregivers. Relaxing is the best way to return refreshed to handle your many responsibilities as a caregiver.

“E” stands for “Energize.” Caregiving is often round-the-clock. Respite isn’t simply getting a few hours off. It’s necessary to help you reenergize and reduce your stress

“S” is for “Sleep.” Understandably, caregivers often have difficulty sleeping. Address sleep problems and insomnia before they take too great a toll on your health.

“P” is for “Programs that can help you.” Find these programs!

“I” is for “Imagination.” Let your mind run free. Read a book. See a movie. You have been so occupied with the nuts-and-bolts of caregiving that refreshing your mind will actually help you be a better caregiver.

“T” is for “Take Five.” Don’t feel guilty. You need a reprieve – a few minutes to temporarily disengage, so step back and take a breather for your own good.

“E” is for “Exhale.” A simple breath in and then a long exhale can help you focus and increase your vitality. A few deep breaths can give you more energy, reduce stress, and lift your mood. So if you need help managing any of the many challenges that come from caregiving – such as isolation, feelings of anger or depression, or communicating with doctors – feel free to check out CAN’s free resources at CaregiverAction.org. And if you are a patient who relies on a family member for help, do them a favor and send them to CAN’s resources because they need someone to lean on, too!

Although the scalp can be frequently involved with pemphigus/pemphigoid, associated hair loss has only rarely been described. In one case, treatment with oral and topical corticosteroids combined with mycophenolate mofetil resulted in clinical remission, with regrowth of scalp hair. (1)

The main connection between prednisone and hair loss seems to be that, as a side effect of using of the drug, some users have complained of thinning hair.  High doses of the drug can make hair more brittle. This brittleness can make hair more fragile and increase shedding and breakage. Hair thinning may become more severe in individuals taking prednisone who also choose to use a chemical process on their hair such as hair dye or a perm. (2)

The connection between prednisone and hair loss is still being explored.  If you are experiencing hair loss, it is best to discuss with your dermatologist and a change in dosage or the use of additional medications may be used to help avoid this side effect.

I do know of one patient who experienced patches of hair loss.  She wore baseball caps all the time.  It did take a few years, but as she tapered off of her medications, her hair did grow back.  There is no timetable for this as each patient has a different level of antibody activity.  However, do not give up hope.  The hair will return.

(1)      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927177/

(2)     http://www.wisegeek.org/what-is-the-connection-between-prednisone-and-hair-loss.htm

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

Pemphigus and pemphigoid are a group of rare autoimmune diseases that affect the skin and mucous membranes causing painful blistering and scarring. For some patients, the noticeable and sometimes life-threatening, symptoms are too much to work with. The Social Security Administration’s (SSA) disability benefit programs are for patients like those who can’t support themselves because of their disability.

Social Security Disability

If you cannot work enough to earn the SSA’s monthly Substantial Gainful Activity (SGA) limit of $1,130, then you may be eligible for Social Security Disability Insurance (SSDI). Generally, you need to have worked five of the last ten years in a job that pays into Social Security, and additional years depending on your age. Benefits average $1,000-$1,500 each month, but the SSA calculates your payment by averaging your previously reported income, so it may be higher or lower.

After you are approved, you will not receive your first check until five months after the date your pemphigus or pemphigoid started, or your reported onset date. Be aware the SSA may take up to two years to approve the claim; however, you will be given any back pay in a lump sum check. Two years after your reported onset date, you will be eligible for Medicare.

Supplementary Security Insurance (SSI) is not paid from taxes, so it is best for those with little or no work history, or parents applying for children. In most states, you will also be automatically enrolled in Medicaid once approved for SSI. You are allowed to work while on SSI, but individuals cannot earn more than $733 a month in countable income, and couples cannot earn more than $1,100 ($1,100 is the total countable income limit for a couple with SSI, if an SSI-eligible individual is married to someone who is not eligible, then the SSA does a process called “deeming” where they factor in the ineligible spouse’s income and resources to determine payment amounts.). Individuals and couples also cannot have more than $2,000 and $3,000 worth of assets. If a person/couple owns a home, that home is not counted toward their income or resources as long as it is their primary residence.

Requirements for Pemphigus and Pemphigoid

The SSA evaluates all applications they receive first with the Blue Book, their official list of impairments and medical requirements. If you meet or equal a condition in the Blue Book, you will be automatically medically eligible for benefits This means that an individual can qualify for benefits based off of their condition, but the decision is ultimately up to a disability examiner, so an individual may have to file an appeal if the examiner denies their application. .

Pemphigus and pemphigoid can be found in Section 8.00—Skin Disorders of the Blue Book. You need to provide medical evidence of the following:

  • Bullous disease (pemphigus, bullous pemphigoid), with extensive skin lesions that persist for at least three months despite continuing treatment as prescribed;
  • Chronic infections of the skin or mucous membranes, with extensive tissue death or extensive ulcerating skin lesions that persist for at least three months despite continuing treatment as prescribed.

If you do not meet a Blue Book listing but feel your conditions restricts you from performing SGA, you may still be approved with a medical-vocational allowance based on your limitations. Applicants do not need to do anything for a medical-vocational allowance. The medical-vocational allowance is a determination made by the SSA during the application process after they determine that someone  is not medically eligible by the Blue Book criteria. This determination takes into account a person’s ability to do the work they have been doing, whether they would be able to be re-trained for another job, whether they can perform any type of work that they’ve done in the last 15 years among other factors.

Applying for Social Security Disability

Talk to your doctor before completing the SSI application. Because the claim can take so long to process, be reviewed, and a determination made, it may not be worth applying if your doctor does not think your chances are good enough. If you do decide to apply, a detailed statement from your doctor about the limitations caused by your pemphigus or pemphigoid is crucial to the claim.

The SSA offers a convenient application on their website for SSDI. SSDI is Social Security Disability Insurance – meaning that it is based off of your work history and income, and its premiums are paid with payroll taxes. SSI is a needs based program and because of that has income limits, restrictions on resources, and a lower maximum benefit amount. If you’re not comfortable applying online or you are applying for SSI, you will need to make an appointment at your local SSA office. You can find a list of documents (such tax information and a birth certificate) you will need, in addition to important medical evidence (labs, imaging tests, and surgical reports) on the SSA’s website.

On March 2nd, 2016, six of my fellow pemphigus and pemphigoid (P/P) advocates and I visited my Congressional members to ask them to co-sponsor legislation that would make it easier for Medicare patients to have IVIg infusions done at home. IVIg therapy is a treatment that many patients such as myself use in conjunction with immune suppressant medication to control our diseases.

Unfortunately, getting IVIg home infusions under Medicare can be complicated because there is a gap between Medicare Part B and Medicare Part D. Infusion therapy is fully covered by Medicare in hospitals, skilled nursing facilities, hospital outpatient departments, and physician offices, but not in a patient’s home. However, if a patient wants to get the infusion done at home, Medicare pays for the infusion drugs (under Medicare Part D), but not the medically necessary services, supplies, and equipment used in the provision of infusion therapy (under Part B). This makes access to these much needed services costly or impossible for many home infusion patients. As a result, most Medicare patients in need of infusion therapy often receive their treatments in health care facilities instead of in their homes, although home may be the setting that is the most desirable, safe, convenient, and by far the most cost effective.

Congress has been concerned with this issue for many years, but has yet to approve any legislation. In January, Congressman Eliot Engel, Representative for New York’s 16th congressional district, and Senator Johnny Isakson, Senior Senator from Georgia, introduced the Medicare Home Infusion Site of Care Act of 2015 (H.R. 605 and S. 275) that would remedy the problem. As we shared our stories on behalf of the entire P/P community, I could see that many of the legislators’ offices we visited began to understand the dilemma. However, it was clear this issue would take an effort by the entire P/P community for our voices to be heard.

I urge you to contact your congressional members and ask them to co-sponsor this crucial legislation. Reach out to the senators on the Senate Help Committee and the representatives on the House Committee on Energy and Commerce who control whether this legislation will move forward. Let’s start a conversation by using the hashtag #medicarehomeinfusionact on Facebook, Twitter, and Instagram. Together we can make a difference!

The biggest problem with dental implants in pemphigus and pemphigoid (P/P) patients is that P/P are often treated with corticosteroids or other immune suppressants for prolonged periods of time. This makes these patient poor candidates for dental implants because the implants will usually not integrate into the bone.

Failures can also occur if the patient already has implants before they have P/P. They may also be more susceptible to periodontal disease because of their altered immune responses and altered bone metabolism.

Insurance

It is at least theoretically possible that steroids could facilitate the loss of some or all of the teeth, especially if the patient has severe P/P requiring a lot of treatment. However, I doubt insurance companies would be willing to reimburse for implants because of the extremely guarded prognosis. They might consider reimbursing for conventional dentures, though.

More Detail

We consider prolonged steroid therapy as a contraindication for dental implants. There are a couple older case reports (1990, 1991) describing successful implant placement in these patients, but the papers are quite old and probably did not really confirm success.

A recent 2013 case report* described success in a patient who had only oral pemphigus vulgaris (PV) and who had steroid therapy for a relatively short time. In this report the patient had two implants placed under a full denture, and the case was followed for 32 months. The authors described very gentle but conventional implant placement and denture management but nothing out of the ordinary.

If an oral PV patient is interested in dental implants, it might be of value to have their doctor review this paper. However, I am not convinced that this small case report indicates that implant placement is highly predictable and cost effective in PV patients, and we have not elected to place implants in anyone on long-term steroid therapy regardless of the disease or disorder being treated.

*Altin, N., Ergun, S., Katz, J., Sancakli, E., Koray, M. and Tanyeri, H. (2013), Implant-Supported Oral Rehabilitation of a Patient with Pemphigus Vulgaris: A Clinical Report. Journal of Prosthodontics, 22: 581–586. doi: 10.1111/jopr.12050

My name is Marlis Lippow, and I reside in Northern California. I participated in a randomized, double-blind, double dummy study evaluating rituximab infusions vs. 2,000 mg of mycophenolate mofetil (Cellcept®).  I had previously received rituximab infusions so I had a pretty good idea of what to expect if I was to again receive it. I had three previous rounds and my doctor said the effects should last about six months, after which I would probably need another round. I was lesion-free for about seven months before the lesions started to return. I also was on CellCept and prednisone, so I know how those affect me.

Learning About the Trial

My doctor mentioned a clinical trial, answered my many questions, and asked me to think about it.  I returned a month later for a followup appointment and there was another doctor present. She was talking about the trial and it seemed she expected me to be a part of it. I was still unsure and had more questions. She did explain that before I could be accepted, I’d undergo a screening (ECG, chest x-ray, and blood work). That was great, I would find out how I am doing. If I passed the tests, I could decide if I wanted to participate. The trial included a stipend, $50 for each session for gas and parking. That sounded good since I live about 45 miles away.

Making the Decision

My doctor and I discussed the pros and cons of the assorted medications and what I’d need to take if I did not participate in the trial but still needed rituximab. Either way, the side effects are not pleasant.  Basically, we talked about the lesser of the two evils.

I learned my doctor is referred to as the Principal Investigator (PI) and the other doctor is the Sub-Investigator (SI). The SI would be seeing me every month. Since the SI is not my primary doctor, it is very important she have a complete grasp of my medical history. During my visits I would have blood work and urinalysis done. The PI would get the test results and be aware of my progress and any possible problems. If he felt there was a concern, he would end my participation in the study.

I also learned I could opt out of the study at any time if I became uncomfortable.

In the end, I chose to be in the trial.

My Trial Experience

Throughout the study, I felt my doctor was most concerned about my well-being, as he should be. He even called me in between visits and that gave me a good, positive feeling.

I received two initial infusions two weeks apart. After about five months, I received two more, also two weeks apart. By the third round I no longer had any sores.  I was told that I was “controlled” and after the last infusion, I’d be in remission! My doctor told me this remission should last anywhere from six months to three years. I am hoping it will be longer!

Don’t be worried about the infusions.  The infusion nurses are angels and take wonderful care of you! They are kind, let you know what to expect, and give you an idea of how you will feel.  If you have any questions, you will have the phone numbers for the PI and SI and are encouraged to use them.

Clinical trials are not for everyone. In fact, there are many qualifying and disqualifying criteria set by the drug manufacturer. I encourage everyone to consider participating in a trial to help advance research on new and emerging pemphigus and pemphigoid treatments. While the short-term benefits help us now, the long-term benefits may change the lives of patients for years to come.

The purpose of advocating in Washington, DC is to spread awareness and lobby for favorable legislation that affects the entire IPPF community. At Rare Disease Week on Capitol Hill 2016, we had 7 members of the IPPF community advocating for:

  • HR 971/S1421 (OPENACT): legislation that will repurpose “off label” drugs for rare disease indications that are not currently covered by the FDA
  • HR 605/S275 (Medicare Home Infusion Act): legislation that will make it easier for Medicare patients to get infusions done in their homes
  • HR 1600 (Patients Access to Treatment Act): legislation that would cap the amount that insurance carriers can charge patients for more expensive medications
  • S 2030 (Advancing Targeted Therapies Act): legislation that would allow information learned in clinical trials to be used in the development of new therapies
  • All Congressional Members to join the Rare Disease Caucus

From the Advocates:

Sarah Gordon

This was my second time advocating on behalf of the pemphigus and pemphigoid community, having visited Capitol Hill with Marc and Kate in the fall. I expected it to be quite similar, and in many respects it was. However, being part of a larger group of rare disease advocates participating in Rare Disease Week made a big difference. Hearing from two congressmen and the newly appointed head of the FDA at the lobby day breakfast emphasized the importance of bringing together advocates from across the rare disease spectrum – not only the power in numbers but also the variety of knowledge and experiences that we could bring to the table.

Mary Lee Jackson

When I received an email about going to Capitol Hill, I got excited and thought it will be easy. But I was wrong it was hard work. I hadn’t walked so much in all of my life. I felt good about what was done on Capitol Hill. It was worth all I went through to get the word out about rare diseases.

Debra Levinson

There’s plenty we can do this election year: Consider writing letters and making phone calls to bolster these pieces of legislation; email your member of Congress, which is made easy utilizing the automatic draft letters on rareadvocates.org; or take advantage of in-district lobby day opportunities to build relationships with your members of Congress. I am hopeful now with so much support we can help ourselves heal. We are the voices of the rare disease community with a common role.

Paula Halicki

Not only was I representing myself, the IPPF, and the pemphigus/pemphigoid community, but I was also representing a lot of other people with healthcare issues who could not represent themselves. And quite a few who never will. Plus I told my story, and a Congressman listened.

Doris Chenier

We may have a rare disease but no one will know about it unless we use our voice to speak to people that can make a change.

Angélica N. García Romero

I had great meetings with the staff of the representatives and felt very accomplished. But to top it all, when I was taking my flight back to Puerto Rico, my representative was on the plane too! When all the turbulence stopped, I went up to him, and had the meeting right there.

It’s no secret among the pemphigus and pemphigoid (P/P) community that treatments to help these rare diseases are not always ideal. It’s also common for patients and caregivers to reach out to the IPPF seeking advice on holistic/natural/eastern medicines to treat P/P before the typically used western medicines recommended by physicians.

The IPPF understands that the potential side effects of steroids, immunosuppressants, and biologics can be very concerning. You already have a lot going on with your body and immune system. Why subject your immune system to these medications if you don’t have to? The IPPF is not against patients trying holistic or more natural remedies. We truly want P/P patients to get into remission by whatever means work for them. However, you need to know one very important fact before trying any natural treatments.

Many natural or holistic treatments work by “boosting” or “enhancing” your immune system. When you have an autoimmune disease like pemphigus or pemphigoid, that means you have a compromised immune system. Therefore, if you “boost” or “enhance” your immune system with an active autoimmune disease, you may be putting yourself at risk of “boosting” or “enhancing” your disease activity.

The IPPF highly recommends that you do your research before you try any natural or holistic treatments. Make sure the treatment you are interested in won’t boost your immune system. The IPPF also recommends that you consult your doctor before trying any treatments. While your intention of trying this treatment will be to make you healthier and improve your disease activity, you may be inadvertently making your disease worse. That is the last thing we want for you, and we know it’s the last thing you would want for yourself.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/6″][/vc_column][vc_column width=”2/3″][vc_empty_space height=”32px”][vc_separator style=”thin”][vc_custom_heading text=”Therefore, if you “boost” or “enhance” your immune system with an active autoimmune disease, you may be putting yourself at risk of “boosting” or “enhancing” your disease activity.” The IPPF doesn’t want to discourage you from trying something that could alleviate your disease symptoms or make you feel more comfortable. We just want you to thoroughly research the product and consult your doctor before doing so.

Going off of prescribed medication in order to try a holistic treatment is not recommended. Patients who go off of treatments to try natural therapies without consulting their doctors can put themselves in a potentially dangerous situation. Let your physician be on this journey with you.

The IPPF does recommend you take your vitamins, exercise, and eat a balanced diet. We also recommend consulting your doctor about ALL treatments that could help treat your pemphigus or pemphigoid.

It has been a busy few months for the Awareness Campaign. With outreach to dental students in full swing, it was time to expand our reach to dental practitioners. And where do we find large groups of dentists, dental hygienists, specialists, and assistants? Dental conferences! We rent a booth on the exhibitor floor and talk with dental practitioners as they walk through the exhibit hall. So far, we’ve reached nearly 2,000 dental professionals.

In November, we attended the American Dental Association’s Annual Meeting in Washington, DC. December found us at the Greater New York Dental Meeting in New York City, and in January we kicked off the new year at the Yankee Dental Congress in Boston.

Our current plans call for us to have a booth in Atlanta at the Hinman Dental Meeting in March, followed in April by the Oklahoma Dental Association Meeting in Oklahoma City.

Many of the larger meetings have 20,000+ people attending. There are rows and rows of exhibits and the halls often seem endless! We usually meet with around 600 people per conference, which is pretty good for a small non-profit. We don’t have large hanging signs, bright lights, or fancy electronic displays. But we do have many free resources and great educational materials!

These conferences are usually three or four days long, and we spend eight or more hours each day at the booth. We couldn’t do what we do without the great help of local volunteers, many of whom are pemphigus or pemphigoid (P/P) patients or friends and family of patients. Patients are encouraged to share their diagnosis stories and reinforce the unique role dental professionals play in getting patients diagnosed sooner.

How do we encourage dentists to stop by our booth? We stand near our booth table, smile, and ask, “Have you heard of pemphigus?” or “Is pemphigoid on your radar?” It is that simple! Many people look at us like, “Pemphi-WHAT?” almost as if we are speaking a foreign language. Once we hand them Awareness Postcards, brochures on the campaign with scientific information, and our Quarterly newsletters and they see the names in print, some recognize them because they remember them from school, saw them in a textbook, or have previously diagnosed a patient. For others, it’s the first time they’ve ever heard or seen the words “pemphigus” and “pemphigoid.” It is truly rewarding to be the person who educates someone about these rare diseases.

“Pemphi-WHAT?” In addition to sharing stories and passing out materials, we also ask dental professionals to take a short survey describing their experience and confidence in diagnosing P/P. We asked, “On a scale from 1 to 5, how confident are you in your ability to recognize the clinical presentation of pemphigus and pemphigoid?” About a third (27/85) of dentists and half of hygienists (14/28) reported low levels of confidence in their ability to recognize P/P. We also asked 141 people if they had heard of the IPPF before they stopped by our exhibitor booth; 81% had not.*

These figures support the need for the Awareness Campaign and increased outreach to the dental community. Since such a large percentage of dental professionals had never heard of the IPPF, we also recognized the need to spread awareness of our Foundation in general. We encourage dental practitioners with P/P patients to inform their patients about the IPPF and all of our patient support services.

These conferences are an excellent way for us to meet dental professionals and spread awareness of P/P and the IPPF. Because of the connections we’ve made at these gatherings, we’ve received requests for Continuing Education presentations and dental student lectures; learned about some great media opportunities; had an article written about us; and have secured some awesome product donations for our Annual Conference goodie bags!

Our goal is that one day dental practitioners will pass by our booth and say, “Yes, I already know about your Foundation.” Until then, we will continue setting up our booth and repeating over and over, as many times as it takes, “Have you heard of pemphigus and pemphigoid?”

*2015 data collected by the IPPF at two dental conferences

“Is there a diet I can go on to help treat my disease?”

It’s one of the most common questions that I receive at the foundation. The answer is, unfortunately, no.

There is currently no diet that will help to put your disease into remission. However, there are certain foods that may exacerbate your condition.

Pemphigus and pemphigoid are very patient-specific diseases. Everyone’s disease activity varies. Well, the same thing goes for diet and these diseases. The foods that negatively affect one person’s disease activity may do nothing to another individual. It is about becoming an expert on you.

We recommend keeping a food calendar or journal. Write down all of the foods that you eat each day, along with your disease activity. Over time you may begin to see patterns form. For example, you may see that every time you eat onions, new lesions appear or current lesions worsen. You then can try to omit onions from your diet to see if it helps.

Patients have reported improved disease activity after changing their diets or eliminating certain foods. It should be noted that other patients have reported no change from adjusting their diet. Again, it is about becoming the expert on you and working with your treating physician every step of the way.

Foods that patients have reported to be bothersome (you may want to talk with your doctor about avoiding these):

  • Citrus
  • Acidic Fruits
  • Bagels
  • Garlic
  • Potato Chips
  • Barbeque/cocktail sauces
  • Horseradish
  • Relishes
  • Chili
  • Onions
  • Red Sauces
  • Chocolate
  • Pickles
  • Tomatoes
  • Creole
  • Popcorn
  • Worcestershire sauce
  • Pretzels
  • Pizza
  • Tortilla Chips
  • Red wine
  • Coffee

Some patients’ oral disease activity is so bad that it is hard for them to consume any food at all. Lesions in the mouth can be painful and cause severe discomfort when eating. The result is a poor nutrient intake, which can result in weight loss and loss of the body’s protein stores. The resulting malnutrition causes fatigue, impairs wound healing, and decreases the body’s resistance to infection.

Suggestions to help prevent malnutrition:

  • Eat a variety of foods daily.
  • Take a multivitamin with minerals if you feel you do not eat the recommended serving sizes of each food group.
  • Weigh yourself weekly. If losing weight, investigate ways to increase calories and protein in your diet.

Soft foods which may be easier to swallow:

Cook coarse or hard foods, such as vegetables until they are soft and tender

Soften or moisten foods by dipping them in gravies or cream sauces

Take a swallow of a beverage with solid food

Eat small frequent servings rather than a large amount of food at one time

Rinse your mouth with water, peroxide, or Biotene during and after eating to help remove food and bacteria and to promote healing

  • Soft fruits, such as applesauce
  • Nectars, such as peach, pear, or apricot; no fresh juices, like orange or grapefruit juice
  • Apple juice (diluted with water if necessary)
  • Canned fruits
  • Pureed meats and vegetables
  • Milk shakes (add protein powder or egg whites for additional calories and protein)
  • Custard and puddings
  • Macaroni and cheese
  • Pasta with margarine or butter
  • Scrambled eggs, egg beaters, omelets, egg salads
  • Oatmeal and Farina (cool to room temperature)
  • Whipped potato (sweet potato or yams)
  • Mashed vegetables (carrots and peas)
  • Cottage cheese
  • Yogurt
  • Cheesecake
  • Meatloaf and tuna casserole
  • Ensure drinks
  • Soups
  • Casseroles
  • Pastas
  • Smoothies

The First Amendment to the United States Constitution guarantees the right of all citizens to communicate with their elected officials. So you might be asking yourself, “Does my Congressional Representative really care what I think”? Well, the answer is YES!

A recent study showed that if a Member of Congress has not arrived at a firm decision on an issue that a constituent contacting their Washington D.C. office will influence their decision. The study illustrated the degree of influence that the following types of communication will have on a congress person’s decision: phone calls 72% influence, individualized postal letters 70% influence, and individual email messages 69% influence.[/vc_column_text][vc_custom_heading text=”The study illustrated the degree of influence that the following types of communication will have on a congress person’s decision: phone calls 72% influence, individualized postal letters 70% influence, and individual email messages 69% influence.”

Writing your Congressional Member may seem like a small thing, but they need to know that their constituents are paying attention. They want to hear about what issues are important to you. When writing your letter/email to your Congressional Member, you may want to share your story with them and how it relates to your issue. Personalizing your letter/email will grab their attention and give them more reason to consider your issue. It is recommended that you keep your letter/email simple and no more than three paragraphs. Provide facts about the issue you are addressing and try to be as specific as possible. Be sure that you cite the name and number of the Bill or Legislation that you are asking them to support. If they are already a supporter of the Bill, thank them.

Don’t forget to provide your contact information so they can respond directly to you. Remember, your voice can go a long way towards helping your Congressional Member know where the public stands on your issue. The more you correspond with your representative, the more it will help you build a long-lasting relationship with him or her. That relationship is not only your right as a citizen, but a privilege you should exercise.

Many individuals with pemphigus and pemphigoid (P/P) present with chronic mouth sores, often well before lesions appear on the skin or other parts of the body. These painful mouth sores tend to be persistent and present as red, ulcerated areas. In some cases — especially those with mucous membrane pemphigoid — lesions may predominantly involve the gum tissue. However, most people with P/P suffer lesions in multiple areas of the mouth, including the tongue, cheeks (buccal mucosa), wet surface of the lips, floor of the mouth, hard and soft palate, and throat.

Oral lesions are often subtle, especially in early stages of P/P. As a result, P/P are often misdiagnosed by both medical and dental practitioners as thrush, food or toothpaste “allergies,” poor oral hygiene, viral infections, or erosive lichen planus. Many patients with P/P are first treated on an empirical basis (treatment based on observation and experience without a definitive diagnosis), often with multiple medications, until one approach offers some relief. The relative rarity of these conditions mean they are often not on a medical or dental practitioner’s “radar” when assessing a patient’s oral lesions.

So if you suffer oral lesions, how can you partner with your dental health care provider to come up with a definitive diagnosis? A thorough review of your symptoms is critical. Make sure your dentist or dental hygienist listens carefully and asks detailed questions about your concerns, such as:

  • How long have you had lesions?
  • What areas are involved?
  • Do you have any skin, eye, vaginal, or rectal involvement
  • What do the lesions look and feel like?
  • Do the lesions move?
  • Does your pain level and disease activity vary over time?
  • Do you currently have any active lesions?

Biopsy confirmed early gingival and mucosal lesions of mucous membrane pemphigoid. These lesions were managed as “non-specific gingival irritation, suspect allergy” for several months prior to a diagnostic biopsy being obtained.

The saying “diagnosis dictates treatment” is particularly relevant when it comes to treating oral ulcerative conditions.”

While early disease symptoms can be subtle, most of the conditions for which P/P are misdiagnosed are not typically chronic (with the possible exception of erosive oral lichen planus or chronic ulcerative stomatitis). Moreover, at least to a clinician with experience diagnosing and managing these conditions, the clinical appearance is quite distinct — toothpaste allergies and poor oral hygiene do not lead to widespread, chronic oral ulcers!

The saying “diagnosis dictates treatment” is particularly relevant when it comes to treating oral ulcerative conditions. Therefore, the best advice I can offer is threefold:

  1. Your dentist or physician needs to take your complaint seriously and needs to thoroughly investigate your symptoms.
  2. A diagnostic tissue biopsy is essential before your dentist or physician treats you empirically with antifungal, anti-viral, or corticosteroid medication.
  3. If the clinician assessing you does not insist on performing a diagnostic biopsy, insist on being referred to a clinician with extensive experience in the diagnosis and management of oral lesions (e.g an oral and maxillofacial pathologist, periodontist, oral and maxillofacial surgeon, or dermatologist).

Bill Starrels (l), Marc Yale (c), and Sarah Gordon (r) outside the Washington, DC office of Congresswoman Julia Brownley of California.

When the email landed in my inbox last month asking for pemphigus and pemphigoid patients and caregivers to advocate on Capitol Hill, I didn’t hesitate. I live just miles from the Hill, and it was time to share my story and encourage lawmakers to take a stance on research and treatment for rare diseases like pemphigus and pemphigoid.

When my pemphigus was diagnosed eight years ago, I had just given birth to my first son. It was a difficult time, combining the exhaustion and stress of new motherhood with the pain, confusion, and anxiety of an undiagnosed illness. Once I was diagnosed, the first line of treatment, Cellcept, caused neutropenia, a white blood cell condition making me susceptible to infection. So with much trepidation I used the off-label treatment, Rituxan. In retrospect, I see that despite the challenges of my illness and treatment, I was incredibly fortunate. I saw Dr. Grant Anhalt, who was a true lifesaver, and the Rituxan worked beautifully! I have now been in remission for nearly five years. Most remarkably, I was able to give birth to another healthy and happy boy four years after the first. Yes, when I received the email last month asking for advocates on the Hill, I knew it was time. And what a time it was.

Before heading up to the Hill, I discussed the various bills before the House and Senate with Marc Yale, Certified Peer Health Coach at the IPPF. Unfamiliar with congressional practices and language, I was still easily able to grasp the reasons these bills were so crucial for people with rare diseases like pemphigus and pemphigoid. They dealt with incentivizing drug companies to repurposes medications like Rituxan to make them more accessible; they defined the terms of telehealth, a crucial first step toward allowing highly specialized physicians to treat patients remotely; they aimed to maintain funding for vital NIH research on rare disease treatments. Through my conversations with Marc, I found that my personal story could speak directly to the importance of several of these bills.

On October 20, I met Marc, Kate Frantz, Awareness Program Manager at the IPPF, and Bill Starrels, whose wife has pemphigus, at the Capitol. Entering the congressional office, I had the uneasy sensation of being on an episode of the HBO comedy Veep. But I quickly found that the staffers with whom we met were not snarky and self-involved, but rather knowledgeable, compassionate, and devoted to their work. We met with staffers from the offices of Julia Brownley, Doris Matsui, Barbara Boxer, and Dianne Feinstein from California, as well as my own representative, Eleanor Holmes Norton, of Washington, DC. Speaking to them about the bills at hand through the lens of my personal experience made me feel at once vulnerable—presenting myself for the first time as a person with a rare disease—and empowered—taking the opportunity to advocate on behalf of myself and so many others. I learned a tremendous amount about how Congress functions and also quite a bit about my own potential as an advocate.

In the end, I was correct: the time was right for me to share my story with lawmakers and become an advocate for persons with rare diseases such as pemphigus. Keep an eye on your inbox for messages from Mark and Kate. You might just find that soon the time will be right for you as well.

Kate Frantz (left), Awareness Campaign Manager, with Marcy Syms (center) and Mindy Unger (right) at the Greater New York Dental Meeting. The Awareness Campaign is generously funded by the Sy Syms Foundation and the Unger family.

The IPPF Awareness Campaign seeks to reduce pemphigus and pemphigoid (P/P) diagnosis times by increasing symptom recognition among dental professionals. It’s important for the Awareness Campaign to connect with dental communities, and one effective way to do this is by exhibiting at major dental conferences.

Recently, the Awareness Campaign was an exhibitor at the American Dental Association’s (ADA) Annual Meeting in Washington, DC from 11/5-11/10 and the Greater New York Dental Meeting (GNYDM) from 11/29-12/2. Campaign staff and volunteers connected with over 600 dental professionals at each meeting, handing out brochures and post cards specifically designed to help these dental professionals recognize P/P symptoms.

An important feature of the IPPF exhibitor booth was the “Meet a Patient” area, where conference attendees were encouraged to ask a volunteer with P/P about their diagnosis story. This kind of personal appeal goes a long way toward helping dental professionals remember to “Put It On Your Radar.”

Another result of attending these conferences is the opportunity to network with others in the dental community who can help spread the word about P/P. At GNYDM, Awareness Campaign Manager Kate Frantz was interviewed for an article in Dentistry Today. The article was published the day after the conference ended, and it featured both an overview of the Awareness Campaign and key information about P/P.

With the success of the ADA and GNYDM exhibitions, the Awareness Campaign will continue to pursue these valuable opportunities to educate dental communities about P/P in 2016. The next event is the Yankee Dental Congress in Boston, MA from 1/28-1/30.