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It all started with me — a true foodie — and a scrumptious kettle chip I sampled at a barbecue in late August 2012. As an executive chef and owner of two restaurants/bars, I’m one of those people whose world revolves around great food and friends, cooking and entertaining. I used to throw dinner parties for 14 people in my home and served up multiple courses every Wednesday night. I was even written up in Time Out Chicago. . .

Back to the barbecue. When I bit into that perfectly cooked kettle chip on that late summer day, I savored its salty thickness at first. But then, I said — ouch.

The sharp edge of the chip cut me on the area between my gums and my cheek. It didn’t really phase me. I thought to myself the mouth heals quickly and it would be gone in a couple of days.

Days passed and the cut remained. I went online to research homeopathic remedies. I rinsed with honey, gargled with a hydrogen peroxide/water mix, chewed basil leaves. If I came upon a remedy — I tried it. Weeks passed by, and there was no change. In fact, my condition grew worse. I instinctively knew something wasn’t right.

When my dentist examined me, she commented on how bad the sore in my mouth looked, but had no idea what was causing it. She surmised it might be Herpes and I completed a prescription meant to heal it. When I went back to see her there was no change — and no ideas what this might be.

I visited my uncle in New York who was a practicing dentist of forty years. He suggested I gargle with salt water and restrict my diet to soft foods. I was diligent in following his advice, but again, nothing changed.

From there, I saw many doctors: my primary care physician, oral surgeons and oral pathologists, rheumatologists and allergists. The feedback was always the same – the inside of my mouth looked horrible, but the cause was unknown. All

I knew was I couldn’t eat anything I used to love.

My diet was eventually restricted to egg whites, oatmeal and protein shakes. Any food harder was impossible for me to eat. Spices of any kind were out unless I wanted to be brought to my knees in pain. I began an investigation of my own.

I spent countless hours on the Internet looking up anything that could help me find the answer. . .what was wrong with me? I became so frustrated, I would leave doctors’ offices and picture them closing my file and moving on to the next patient – possibly shrugging their shoulders. Depression began to set in. This was my health, and I was grasping for answers.

I saw another oral surgeon who sent a biopsy sample to University of Chicago. I waited three long and excruciating weeks for the biopsy to come back inconclusive. More frustration.

One day I was having lunch with my brother and ordered a salad. Soon I felt a horrible burning sensation, one I likened to drinking a Molotov cocktail. I realized it was a red onion.
That onion eventually lead me to my answer. . .

I searched online for ‘mouth sores’ and ‘onion.’ The words ‘Pemphigus Vulgaris’ popped up, front and center. As I read more about this disease, I discovered five documented symptoms and I suffered from all of them. I learned a number of foods, including onions, aggravate the disease and its symptoms. Though PV can occur in individuals of all ethnicities, I discovered people of Mediterranean ancestry, Ashkenazi Jews and people from Columbia and Brazil are more likely to have it.

The most damning information I came upon demonstrated what was believed to be the severity of this condition in a 2007 publication.

“Unfortunately, if you have been diagnosed with the autoimmune blistering disorder known as Pemphigus Vulgaris, it is very likely that your life expectancy will be significantly reduced, often to just within a few years of the onset of symptoms. Most early deaths associated with autoimmune blistering disease are the result of secondary infections, such as that of the genitourinary system.”

That was one of the first published articles I read about the disease and I was horrified. Though I could not give in to the idea it would kill me in a few years, I did believe I was in for a miserable life ahead.

Despite the doom and gloom, I finally had an answer after three months of living in the dark. Finally. Now I had to do something about it.

My primary doctor suggested I see an ear, nose and throat specialist. I reached out to a dear friend who is a Harvard educated physician, Dr. Scott Smith, who was practicing dermatology at Northwestern. He said he had attended a seminar years ago about this disease, and agreed to help me. I learned about a blood test for Desmoglein, which are proteins that join human cells together. People who test at levels of 0—9 don’t have PV, or express any symptoms; levels of 9—20 are classified as ‘undetermined’; levels of 20+ indicate a person has the disease. When I was tested, my level was at 75.

The very next day I couldn’t even talk; I was certain this disease had already begun to take a terrifying toll on me.

Dr. Joquin Brieva, a specialist in Chicago, explained how different parts of the mouth, throat and eyes could be attacked. Basically, it is the good cells attacking other good cells in the body’s mucous membranes. The glue that held my skin together was actually being attacked by my own body.

What I also learned some people respond positively to Rituxan® (rituximab), a type of chemotherapy. The good cells doing harm to the body are tagged by this treatment and stopped from doing more damage. Monoclonal antibodies (clones of original cells) help to strengthen the immune system.

I told people the most dangerous thing I did every day was to brush my teeth; it took one slip of the toothbrush from the front to back and I ripped the lining of my cheek like stripping wet drywall of the wall with a putty knife.

When I began Rituxan® in January 2013, my Desmoglein levels had jumped from 75 to 128. Every day after I finished my treatment I would go shopping. There really is something to be said for retail therapy to get your mind off of things. I would push myself to go to the gym for at least ten minutes and ended up working out longer. It made me feel more positive. I never missed a day of work. I would listen to motivational tapes on my drive. I got dressed up and wore a suit and tie every day. I even got dressed up for my treatments.

Besides the exhaustion, and severe depression at times, I became very moody because of the steroids. I got infections in my nails, sties in my eyes, and rashes. It was just awful.

I couldn’t get a good night’s sleep and was in constant pain. Then I met Dr. Judy Paice. She walked into my life at just the right time, and was so compassionate and caring. I was concerned about being addicted to pain medication after reading blogs about the disease. Dr. Paice worked with me to form a strategy to reduce the pain to help me not become addicted to pain medication.

During my chemotherapy treatments my levels of the disease fluctuated. I first dropped from 128 to 98, then from 78 to 58, but then spiked during my third month of treatment to over 100. I became discouraged, but I knew I had to stay positive. Within the year, my levels went down to 12 before my last results were classified as undeterminable.

I learned through my initial research that many people dealing with rare diseases which are a mystery to the medical community. It normally takes about a year and 12 doctors to determine what ails them.

It took me three months, ten doctors, and ultimately my diagnosing myself. It also took tremendous faith, determination, hope and belief that I would find my answer. I didn’t give up on finding a way to heal myself once I learned what I was facing.

Along the way, I wasn’t able to connect with anyone who was going through what I was. I know that could have been healing on its own. My hope is that my story can be an inspiration for others, and I am open to anyone who is going through a similar circumstance to reach out to me.

The larger message I’d like for others to take away is that you must be a true and unwavering advocate for your own health. I told myself at the start of this life—changing journey that I was going to overcome this. And I did, with a steadfast determination and the support and knowledge from a fantastic team of doctors who I was fortunate enough to encounter.

Today, I know there is no playbook for this disease and that it can reappear at any time. I also know I will stay positive and continue my treatment. As Dr. Mehta, my chemo doctor says, “we kill big cancer and we will kill this.” This, and my entire medical team at Northwestern were simply amazing and key in helping me to remain positive.

I never cried while going through this trial of not knowing. I learned what I was up against and did what was necessary to bring about my own healing. However, now when I tell my story to others it is extremely emotional. I hope I can be a beacon of hope for others who might otherwise not know where to turn.

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In the days after being told that you have one of the diseases in the Pemphigus/Pemphigoid family, when you’re running around filling prescriptions for your new, huge, seven-day pill container, it’s hard to feel hopeful.

Maybe you’ve been looking for answers for months – and getting the wrong ones. Maybe you’re finding it a challenge to take care of ordinary everyday things, like brushing your teeth because of painful oral lesions. Or you don’t know how to explain to friends that you’re miserable and not feeling up to your usual activities.

That’s how it was for me. By the time I was diagnosed with PV nearly three years ago, I’d consulted five different doctors over five months and had a medicine cabinet filled with failed ointments, pills and rinses.

Because my symptoms were so widespread, and because the doctors I saw were not familiar with Pemphigus, I’d been told I had everything from allergies to cold sores to possibly cancer.

It was weird hearing doctors, whom I instinctively trusted, tell me that this or that was going on with me, and turn out to be wrong, time after time. Each doctor focused on his or her special area of expertise, ignoring the symptoms that didn’t fit.

I remember calling one doctor to complain the medicine she’d prescribed wasn’t working, and she told me I was using it incorrectly.

Another doctor simply increased the dose of what he’d given me, and a third told me that if a certain cream didn’t work in two weeks, I should come back and be biopsied for cancer.
Frustrating!

Scary!

Finally I saw a doctor who said the magic words, “I don’t know what it is,” and referred me to a great dermatologist, who biopsied me and put a name to my condition. Under his care I began the slow uphill journey back to health.

For me, the hardest part was not the discomfort of eating or washing my hair or the harsh side effects from medications, unpleasant as they were. It was the sad sense that I’d lost something precious and my life would never be the same.

As I learned how to cope with PV over time I found out that, like other major life events, this experience offered a unique opportunity to grow and learn more about myself.

Some encouraging words, for those new to this journey:

1. You will feel better, a little at a time. Celebrate the small steps as your health improves each day, each week and each month.
2. Remember P/P is just a small part of who you are. While it may loom large right now, it will command less of your attention as time goes on.
3. Keep a health journal. I found it extremely helpful – especially in those foggy prednisone days when I got lost in the middle of sentences – to record everything health-related in a notebook.
I wrote down the details of every doctor visit, the questions I wanted to remember to ask, the answers I got, symptoms and feelings, medication doses and so on. I’ve now had my notebook for three years, and it’s so handy for keeping track of lab work, bone density scans and other treatments that occur at regular intervals.
Writing things down also keeps them from swirling endlessly around in your mind and is helpful when talking to your doctor.
4. De-stress any way you can. At the 2012 IPPF Patient Meeting in San Francisco, we learned about the chemicals released by stress that aggravate autoimmune disorders.
My favorite way to get rid of excess stress is by doing yoga. I also enjoy walking, and when I don’t have time for either of those, a few long, deep breaths do wonders.
5. Count on your friends at the IPPF. There’s a wealth of help at the IPPF. You can get one-on-one support from a trained Peer Health Coach, ask questions on the discussion forum or join the active email group.
Online resources, dial-in Town Hall meetings with IPPF’s doctor-researchers, and annual Patient Conferences are other options. I made the mistake of waiting too long before getting involved with this fantastic organization.
6. Give back. Share a tip that worked for you or just lend an ear to help someone else who’s newer to P/P than you. See #5 for places you can jump in.

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A year before I went to the IPPF’s fabulous 2012 Annual Meeting in Boston, I had no interest in gathering for a weekend with doctors, researchers, Peer Health Coaches and other pem-pals. What good could it do?

Since being diagnosed with PV in December 2010, I’d been under the care of a terrific dermatologist. While the initial diagnosis had scared me, I’d read enough on the Internet to feel sufficiently informed. I’m a writer, not a scientist, and, frankly, all that stuff about proteins and B cells scrambled my brain. Did I really need to understand what was happening in my body? My doctor did, and that was good enough.

All I wanted was to go about my life without those nasty sores. So I took my medicine, went for labs, and waited for my condition to clear up.
Only it didn’t clear up.
I flared – badly. Clearly there was more going on than I realized. It was time to accept the fact that I had a chronic disease, one that was still in the early stages of being unraveled by scientists. If I was going to learn how to live with pemphigus over the long haul, I needed the standard tools:

• basic knowledge about the immune system to communicate with my doctor better
• a connection to the medical community to begin to grasp what researchers already know and where current research is headed
• shared experiences with others to better understand how diet, sleep, and stress affect me
• a community for ongoing support
The announcement about the meeting in Boston promised all that so I signed myself up. My daughter, Zoe, accompanied me. With a background of science, Zoe not only was great company and support but translated the molecular biology stuff. Handy!

As we checked in for the weekend, we were warmly welcomed by IPPF staff. Friday’s evening reception was a cozy mingling of patients, family members, and doctors in a setting suited to making new friends and getting to know some of the weekend presenters close up in a casual environment.
Saturday’s workshops covered the gamut of topics related to pemphigus and pemphigoid, their diagnoses and the choices doctors make when prescribing treatment regimes. My favorite talk was the one led by pioneer Dr. Sam Moschella on “Pemphigus Before Prednisone.” He described corn starch baths and treatment with an arsenic derivative called carbosone. Listening to him, the gravity and complexity of the disease hit home.

There was a lot of talk about rituximab, a B-cell targeting drug that has signified a real change in pemphigus treatment. This was particularly relevant to me, as I had just undergone Rituxan™ therapy. In one of the smaller breakout groups, I learned about Dr. Animesh Sinha’s work in genetics. In another, Dr. Vikki Noonan, a dentist, gave us great tips on oral hygiene.

One of the best parts of the weekend was making new friends. Zoe and I sat with a woman from Canada and her daughter at the Saturday night gala dinner and had a wonderful time sharing our lives and many laughs.
Oh, and the delicious food and the generosity of the event sponsors was beyond compare!
What good can a weekend with the IPPF do? It can educate, entertain, and inspire. It can bring to life the truth of the IPPF motto, “A common hope, an uncommon bond”. In short, a weekend can do lots of good!
I will be back again this year in San Francisco. I hope to see you there.