Yearly Archives: 2008

I came down with my first symptoms of pemphigus in the early part of 1994. I have been in remission since 1998 — 16 years without medications or blisters. My life is so different now and I rarely think about it. But it wasn’t always this way.
After I bought my first computer I started searching for information about pemphigus. I came across the IPPF’s online discussion group. I cringed as I read each email and was reminded of how uncomfortable and unnerving this disease can be. I thought about how I managed to go into remission and remain blister-free for so many years, and what it was I might say to the group that could provide some hope of a similar outcome.
I kept journals during the time I had pemphigus, and wrote in them nearly every day. I recorded my medications and my physical state, thoughts and feelings. It was comforting to spell out my changing moods, from hope to despair, and vice versa.
My journals became a confidant of sorts, where I could bitterly complain about my condition, or exalt over the slightest sign of improvement. They also became a valuable source of insight when I looked back through them in my second year of pemphigus and found a pattern of ups and downs that seemed to correspond to those times when I had experimented with various vitamin and mineral supplements.
I could see after adding supplements for a few weeks my entries were more upbeat and optimistic; and when I quit taking them, I became discouraged and frustrated. I tried the vitamins several times to see if I continued to improve. Within 6 months I saw my blisters healing, I tapered off of prednisone, and entered remission. I can’t say for sure taking supplements led to my remission, but I think it’s safe to assume improving my overall health increased my chances.
One key element that could have helped is the mineral zinc. Zinc stimulates the adrenal glands to produce natural corticosteroids. Prednisone is a synthetic corticosteroid. It’s possible increasing zinc levels lowered my need for prednisone while restoring the natural secretion of corticosteroids helping the immune system distinguish between healthy tissues and foreign “invaders.” Zinc also plays a role in the Thymus gland, which produces regulatory T-cells (or T-regs), responsible for secreting immunosuppressants.
You should know I never considered supplements a substitute for prednisone or any other medication prescribed by my doctors. I never deviated from my doctor’s orders. I learned certain key vitamins and minerals are depleted by prednisone and other drugs, including Folic Acid, Magnesium, B-6, B-12, Calcium, and Vitamin D.
I chose a multi-vitamin supplement containing 23.5 mg. of zinc and the recommended levels of other nutrients to counter that effect. After several weeks I reached a relatively normal balance between the two. At least I was able to get through the disease and function without experiencing severe side effects drugs can produce.
Adding a supplement to your diet is something you should to discuss with your doctor. Finding the right multivitamin for you is easy. What was once unique to the health food market is now a common formula found in most pharmacies under a variety of brand names.
The farther away I get from my experience with pemphigus, the less I think about it. The years have gone by quickly. Now that I am retired, I find myself working quietly at home doing things I love, and feeling very grateful for having come through it without any long-term effects.
I no longer take the supplements I feel helped me to recover, or any medications at all. I believe I am living my life the way it was meant to be, but I still keep a journal of sorts. You never know when you might want to look back and remember the good days, as well as the bad.
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.
Can you believe it’s already March? I can’t! Rare Disease Day came and went, Autoimmune Disease Awareness Month is upon us (see page 13 for a special offer), and the Patient Conference is nearly upon us! If you ever wanted to attend — this is the year! Chicago? Need I say more!
New to the Office. I’d like to welcome Noelle Madsen to the IPPF family as Patient Services Coordinator. Noelle has a background in health education, event coordination, and working with patients and physicians. She will join Marc Yale and the Peer Health Coaches helping new and existing patients, caregivers, and medical professionals every step of the way! If you will be in Chicago at the Patient Conference, stop by and welcome her aboard!
2013 Holiday Fundraiser. Wow! Let me say that again: WOW! Our 2013 goal was $50,000 and we not only surpassed it, we crushed it! This Holiday Season we raised over $64,000 that goes directly to supporting our patient services and education programs. Great job, everyone!!
Awareness. The IPPF was in full Awareness-mode at the California State Capitol and the United States Capitol. In Sacramento, I was joined by Kate Frantz, Monique Rivera, and Janet Segall for an afternoon of rare disease advocacy and awareness. The California State Assembly unanimously passed Assembly Resolution 32 recognizing February 28th as Rare Disease Day in California.
Meanwhile, Marc Yale was in Washington, D.C. advocating for support of HR 3116, The MODDERN Cures Act. HR 3116 provides incentives for development of cures and treatments for unmet medical needs. We ask you to contact your Representatives ( and ask them to support HR 3116 (
IPPF joins RareConnect. RareConnect is a growing online network for rare disease communities, bringing together thousands of patients, families, and groups who might otherwise be isolated. Through RareConnect, patients and those who care for them can communicate, sharing experiences and information in a safe, moderated online forum. RareConnect allows patients from different countries to interact in English, French, German, Italian, or Spanish.
Join us at and being connecting with others around the globe. . .for FREE!
That’s it for now. From all of us at the IPPF, we hope you have a great Spring and we’ll see you in Chicago!
To Anna, the IPPF means hope when all hope was gone. For Steve, the IPPF means discovering hundreds of other patients when he thought he was alone. And Jack — Jack says he owes the IPPF his life. To me, the IPPF means helping my ‘pem-family’ find comfort, strength, and support through our dedicated staff and volunteers.
Phone calls and emails come in to our offices every day. Between the new patient calls and flare-up questions, there are little rays of sunshine that bring hope. Thousands of people around the world remember their first call, how the IPPF was there for them, and what the IPPF means to them. Now it’s your turn.
Please contribute to the IPPF this Holiday Season. Your donation funds essential, life-saving programs and services such as the Registry, Peer Health Coaches, Awareness, and more. And now you can be a Sustaining Donor! Our organization is lean, so a higher percentage of your money goes directly to the programs we offer and the research initiatives we sponsor.
You can safely donate online at or use the form below.
As I look back over the past year, I remember how many members of my pem-family I have talked with and helped with the gift of hope. I know for our Peer Health Coaches that number is even higher. This holiday season give the gift of knowledge, support… and hope.
Happy Holidays and Happy New Year!
PEM Friends Administrator, Sandra Turner, had to temporarily step down, so I’m back in the saddle for the time being. Thanks to the help of many people, PEM Friends, a support group in the UK, continues to be a strong and active support group.
Many who attend our London lunches travel from different parts of the country. Last year we even had one young lady from the Highlands of Scotland! From the start, our goal was to get as many people as possible together in an atmosphere of friendship and support. At the lunches, everyone is encouraged to move around the tables and exchange tales of their pemphigus and pemphigoid journeys. This informal approach has resulted in many strong and lasting friendships.
This year’s event was held in London on November 26, 2012, and organised by one of the group’s stalwarts, Isobel Davies. Despite the fact that she runs her own busy business, isn’t feeling well, and doesn’t live in London, she hosted a wonderful meeting. You’re an angel, Isobel!
Dr. Jane Setterfield, a UK leading PV and bullous disease dermatologist, once again kindly agreed to be our guest. Dr. Setterfield spoke one-to-one with anyone who wanted to discuss their disease while the rest of the group listened in. This helped us all learn so much.
We will be having another lunch towards the end of February 2013. This will be held in Leicester and our guest dermatologist will be another highly respected consultant who specialises in PV, Dr. Karen Harman. We are considering another ‘Away Weekend’ again in 2013. Details of these, and other PEM Friends events, can be found on our website at
On Saturday, October 6, 2012, the Los Angeles Support Group held their annual gathering. We met at the Santa Monica Library and 22 people attended. Some had to drive almost two hours to attend, but all agree it was well worth it!
Attendees got to meet Lee Heins, Sonia Tramel, and Greg Wright from our Board of Directors, Senior Peer Health Coach Marc Yale, and ask guest speaker Dr. Vanessa Holland from the UCLA Dermatology Department disease and treatment questions. Dr. Holland said she looks forward to speaking at future meetings as well.
Lots of questions were asked and many focused on rituximab (Rituxan®) treatments and the use of CellCept® and IVIg. It was a terrific meeting because so many issues were covered. Everyone who joined us left feeling more informed and increasingly hopeful.
Prior to the start of the meeting, refreshments were provided by 2012 Annual Meeting Platinum Sponsor KabaFusion — delicious breakfast sweets and coffee! Joining the LASG was Nate Hughes, a representative from KabaFusion. Nate gladly handed out information and answered questions.
After the meeting, many us went to Panera Bread for lunch. Thanks to Marc, Panera Bread generously donated a percentage of each person’s bill back to the IPPF.
If you are interested in more information about the Los Angeles Support Group, please email
The Bay Area Support Group meeting was held on September 29, 2012 in Palo Alto, CA. The enthusiasm, energy, and support was incredible! IPPF Medical Advisory Board member and 2013 Patient Conference host Dr. Peter Marinkovich led a midday discussion for more than 40 attendees on a beautiful Bay Area Saturday. Sponsoring the meeting were Dr. Mike Rigas (KabaFusion) and Susan Billat (BIOFUSION). Also in attendance were IPPF CEO Will Zrnchik, Senior Peer Health Coach Marc Yale, and a local member of the IPPF Board of Directors, Dr. Badri Rengarajan.
Before the meeting began, the room was buzzing with questions leading to an impromptu Q&A session. Many people took part, but the questions seemed to be answered by one woman. When Will introduced her, heads turned and the room gasped: IPPF Founder Janet Segall was in the audience.
Will told the audience about Janet and her work with the IPPF while she modestly smiled with a tear in her eye. All of us owe Janet a debt of gratitude for the work she did to bring pemphigus and pemphigoid to light and create an organization that flourishes thanks to her early care.
Afterwards, Dr. Marinkovich presented on the disease and treatments and opened the floor to questions while attendees enjoyed lunch. He could hardly eat his lunch because of so many questions, but he didn’t seem to mind at all.
The Bay Area Support Group has decided to meet quarterly on a Saturday around noon at the same Stanford Redwood City Clinics facility. Ten people volunteered to help with the 2013 Patient Conference, but we could always use more volunteers!
Thank you to Stanford University for donating the facilities, and to Will and Marc for their assistance in putting together this forum. And a special thank you to Dr. Marinkovich, Dr. Rigas, Susan, and Janet for their support and time.
If you are interested in more information about the Bay Area Support Group, or volunteering at the Patient Conference, email at
As I am writing this, I am trying to hold onto a delicate balance of my clinical psychology practice and a special birthday party/fundraising event. The expression “it is better to give than to receive” means much more to me, and when I see a window of opportunity, I go for it.
Normally, I skip having an actual birthday party, opting instead for a small group of close family and maybe a few friends, a casual evening, and cake. This year was different.
Initially I considered a nice vacation for my husband and me because this birthday was a bit of a landmark for me, and I did want to do something special. However, the more I thought about it, the more I realized that I really wanted to celebrate the fact that I was still alive. This reason was more evident as I recalled the past 12 years and my diagnosis with two very rare autoimmune diseases, amidst the losses of my parents and some family and friends. The question was: How could I celebrate my special birthday and life, AND use this as an opportunity?
A seed was planted.
When we think of planting seeds, many people immediately think about the Spring. Here I am in early mid-Fall having my “a-ha” moment. Interestingly enough, my favorite flowers have been tulips since my first visit to The Netherlands more than 40 years ago. Unlike most flowers, tulip bulbs are planted in the Fall and then come up beautifully in the Spring. I love how these flowers normally bloom earlier than most, and at night or in darkness, they close to protect themselves, reopening when it is once again safe.
A seed was beginning to metaphorically grow in my mind. Why not use my birthday to have a special party/fundraiser/event where guests would be asked to not bring me a personal gift, but rather contribute to a charity of my choice?
Great! Now I was going to have a big party and not just a small, intimate gathering. What would be my first step?
I began to assemble a list of family, friends, acquaintances, colleagues, and the physicians who have been helpful during my journey. The list was a lot longer than I expected.
I kept going through the list. I couldn’t find anyone I didn’t want to include in my celebration. And to compound the issue, I found myself adding more and more names. I even added some out-of-town people, including my life-saving physician, Dr. Razzaque Ahmed from Boston. My original dermatologist in Pittsburgh, Dr. Judy Small, had worked closely with Dr. Ahmed over the phone during the first six years of my treatment (until I had to change doctors because of insurance and facility/provider changes). How could I have a celebration of LIFE and not invite the doctor whose ‘alternative’ treatment of IVIg was the reason I was alive? Remember, IVIg was very controversial back in 2001.
Since it was for charity, I was willing to go that extra mile. I am not sure I was using my old and trusty cognitive model — without emotional interference — but I was determined to stay on track. Finally, I decided on a private club where a dear friend (and a Vice President at PNC Financial Services, a 2012 Annual Meeting sponsor), had generously offered to sponsor my birthday event.
I enjoyed creating the menus, invitations, and RSVPs. Thanks to some technical help from my husband, everything got printed and mailed. Will Zrnchik, our CEO, set up a special Web page for the party so people could donate online.
The RSVPs started coming in and more people than I expected were planning on attending! This was getting big. What about entertainment? I realized I know a lovely and accomplished young woman who is the founder and creative director of a local ballet company whose studio was originally leased to Gene Kelly before he went to Hollywood! She had choreographed a perfect piece just for my celebration that could be performed by two ballerinas.
This effort took a lot of time and effort, but it was a night to remember. The party brought together people who did not know each other, and might not see each other again, but who kept telling me they had been at the “fun” table. The funny part is they were all at different tables!
I was blown away by Dr. Ahmed’s attendance and the speech he gave to educate the important people in my life about the seriousness of my particular diagnoses (many were not aware of my conditions). Even my normally quiet, engineer-minded husband gave a very beautiful and emotional toast in my honor. I swear that if I didn’t also have Sjogren’s Syndrome I would have cried my eyes out!
Many of my guests asked me to make it a yearly event! While flattered, it probably won’t happen at the level of this one, but I will definitely have smaller cocktail-like parties at home and continue to request donations in lieu of gifts.
It feels so wonderful to have both a landmark birthday and a memorable evening and celebration with friends and family who donated to IPPF. The reality is anyone can do this on their own comfort level.
The bottom line here is from that original “seed” came an evening I will never forget and will help others because of generous donations. The icing on the cake is most of my doctors got to meet each other face-to-face for the first time. And, it looks like Dr. Ahmed will be invited to talk to Pittsburgh doctors, residents, and others in the near future with a hope that it could drive some to study and research pemphigus and pemphigoid.
I am thankful to the generous local merchants who provided many items, services and gift certificates for the Silent Auction.
Knowing that this fundraiser can be repeated in small ways over the coming years gives me far more happiness than any one-week vacation could possibly have given me. I am not special for having planned this event, but I get a warm and wonderful feeling just knowing that I was able to embrace a new way of giving. I can absolutely validate that it is far better to give than to receive.
If you have an idea, let that seed evolve. See where it takes you. We can find new ways of giving — whether with special skills, money, frequent flyer miles, volunteering time and services for one of the Foundations’ many committees, educating people, or supporting others emotionally. The list is endless, and you will feel better knowing you are making a contribution that makes a difference.
I am writing this shortly before Thanksgiving, and I will appreciate it more than usual. In recent years I, like many of you, have experienced many losses (people, pets, previously taken for granted good health).
But in many ways my life is now fuller. I have met amazing people and physicians whom I never would have met. As 2012 comes to an end, and the new year starts, move forward in your own way and make a difference. Your life will be fuller for it. That is a promise.
Just plant a seed.
A diagnosis of pemphigus or pemphigoid typically means some sort of systemic medication. Many doctors start a patient off with prednisone for the first couple of weeks, and then add another drug to help reduce the dose of prednisone. When I was diagnosed some 30 years ago, prednisone was the only drug being used. Imuran had just started appearing on the scene. My doctor didn’t know if it was an option, so we tried methotrexate; and that caused too many problems.
Being diagnosed with PV at 37 was not something I handled very well. It took time.
A lot of it.
I was living in Berkeley, California, and alternative medicine was starting to become very popular in the area. I was having difficulty handling prednisone so I started augmenting my healing with Chinese medicine, Biofeedback, Linseed oil, and soybeans. I tried tea that tasted and smelled horrible (my roommates were not too happy about that). I drank a tablespoon of Linseed oil every day, and cooked raw soybeans that I made into soybean patties and ate twice a day. I don’t know scientifically if any of the things I did back then worked, but they helped me live better with prednisone. Along the way, I learned some incredibly helpful relaxation techniques I still use to this day.
After many years living and learning as much as I could about the diseases, I know it is important for someone with pemphigus or pemphigoid to avoid things that might enhance the immune system, such as alternative medicines, vitamins, or foods rich in spirulina and echinacea. These boost your immune system and can negate the effects of immunosuppressive drugs being used to get disease activity under control. Typically a person uses alternative medicines and diet to try and stabilize the immune system. My personal advice is that if you decide to try Chinese medicine, make sure none of the ingredients will harm you in some way. A specialist should know the right combinations to use but always discuss this with your physician BEFORE making any changes to your diet.
Dr. Sarah Brenner (Israel) conducted small studies several years ago on certain foods and how they affect pemphigus and pemphigoid patients. Even though they were not double-blind studies and were very small in size, she was able to theorize that foods from the Alum group might cause problems for people with pemphigus. These foods included onions and garlic. Mediterranean countries tend to eat a lot of onions and garlic, so determining if they pose a problem for you might be challenging.
I am very fond of both onions and garlic so I decided I would test myself. At the time I was clear of lesions but still on drug therapy. For three days, I ate two small cloves of garlic a day on “rice cake pizzas”. Three days later I noticed I had a couple of new lesions. I stopped eating the garlic and two days later the lesions disappeared. I waited several weeks (enough time for the garlic to leave my system) and I tried it again. The same thing happened, as well as a third time.
I came to the personal conclusion that eating a large amount of garlic consistently was not a good idea for me. I found the same thing happened with large amounts of onions and, believe it or not, sourdough bread. I discovered testing foods myself lessened my overall disease activity and allowed me to identify what foods and approximate what amounts were going to result in lesions.
One of the most helpful things I tried was biofeedback and Transcendental Meditation. Before I was diagnosed with PV, I went to the Transcendental Meditation Center in San Francisco and learned some methods for relaxation. Biofeedback showed I was able to significantly reduce my stress quotient. Because of that early success, I recently became certified in Hypnotherapy. Now, I use hypnotherapy on myself and to help others reduce stress.
There isn’t any disagreement that stress reduction is an important part of healing from disease — not just pemphigus and pemphigoid, but any disease. Dr. Terry Wolinsky McDonald (IPPF Board of Directors and a regular Quarterly columnist) has written many articles on coping with stress. I strongly agree with her that it isn’t about the stress itself as much as it is the way we deal with the stress. There are many different methods of stress reduction so finding one that fits into your life is a key to effective healing and coping.
Sometimes being proactive with disease can be difficult. Once the medicine starts to work, many people want to pretend nothing was wrong in the first place. Some simply take their medicine, eat whatever they want, and avoid physical activity. I’m guilty! We just pretend we’re fine hoping a positive attitude will be enough. Having a positive attitude is extremely important, but pretending we don’t have to take care of ourselves can be hurtful. The drugs for these diseases can cause damage to our bodies and a proactive, positive attitude can help promote healing faster.
I have been in remission now for about 15 years, 10 drug-free. I watch my eating habits and notice any changes certain foods cause. Taking prednisone off and on for 10 years has had a negative effect on my spine and joints, but I find ways to exercise: mild yoga, walking, hot pool aerobics, and stretching — and last but not least — relaxation.
I believe a comprehensive approach to healing not only helps us heal our disease, but can help us keep a positive attitude as well.
‘Tis the season for giving thanks and celebrating the holidays with those we love. Things can become so hectic that we forget to thank those around us for being a part of our lives.
Personally, I am thankful for my parents and their advice over the years. “Bird” and “Pops,” as they are affectionately referred to, were never short on tough love or supportive words. I thank my lovely wife, Christina, for her loving support and encouragement that make me a better person. I am thankful for my children, Will, Haley, Alannah, and Noah, and hope each of them support causes dear to their heart.
I thank Janet Segall for bringing me into the IPPF and our Board of Directors for giving me the opportunity to work with our wonderful coaches, advisors, and patients around the world. The underlying theme: I am thankful for the support of others and do my best to pay it forward.
The IPPF does more than support patients — it supports caregivers, family, friends, and physicians. Thank you to Marc Yale and our Peer Health Coaches who collectively have closed more than 500 cases this year answering calls, emails, and postings from people all over the world. Many of our “veteran” patients still remember that scared feeling they had before calling the IPPF and how relieved they felt after receiving support and information. They now pay it forward, helping others in our community.
Recently, a newly diagnosed patient’s daughter called the office. You could hear the relief in her voice when I told her, “Your mom will be fine. Now let’s focus on helping you understand the disease and treatments.” After, she sent me an email thanking me for the information, but more for just taking the time to talk to her. I replied: “No, thank you for calling.”
Yes, thank you for the calls, emails, and interactions that allow us to support one another. You should feel good knowing your involvement helps others at a time when they need the IPPF most.
From my family to yours, have a safe and joyous holiday and a Happy New Year!