By Lee A. Heins, IPPF Treasurer

My story began six years ago on Halloween evening, 1994. I was 41 at the time. My family and I were attending our annual church Harvest Festival. As I walked around the carnival, I enjoyed all of the foods one would expect to eat at such an event. However, this time the popcorn hurt my mouth and the tomato sauce on the pizza stung like acid.

Later that week, I made an appointment with my internist. My throat looked eroded and it was suspected that I had an infection. Over the next two months, we tried several different courses of antibiotics, all without success. By the middle of December, I started losing weight, as I had a difficult time eating due to the pain of the oral lesions.

By New Year's Day, my wife was frustrated by the lack of progress with the internist and quickly enrolled me in a new internal medicine group which had an outstanding reputation. My new primary physician was on vacation so his partner examined me. He said that he "did not know from what I was suffering." Guessing it to be some type of an autoimmune disorder, he prescribed Prednisone, which he believed would stabilize the condition.

In addition, he referred me to an ENT (Ear, nose and throat) Specialist. Meanwhile, I began to contact numerous other physicians whom I had met through the banking business as clients and friends. In all, I believe that I spoke on the phone or in person with no less than 12 physicians. The consensus seemed to be that I should have a biopsy of the tissue in my mouth. The ENT Specialist performed the biopsy and forwarded it to a lab for analysis. The Medical Director of the lab, sensing that something was unusual, sent over a memo to the dermatology pathologist asking, "This isn't pemphigus vulgaris is it?"

I was fortunate that the biopsy was sent to the best dermatology pathologist in Orange County, California. He quickly replied that it was pemphigus vulgaris, and I finally had a diagnosis after four months! Over the following months, I started to research the disease and look for answers. One of my clients was a dermatologist with Kaiser Hospital. He called me with the unbelievable news that he had just received a letter (this was in the days before the Internet was widely in use) from Janet Segall at the National Pemphigus Foundation, which was still in its infancy.

I contacted Janet and she was able to answer my questions and give me the support I needed to face the disease. The most exciting news was that she was organizing a support group in Los Angeles. Later that year, we had our first meeting. I was so excited to meet others who could share my experience. At the first meeting, I was struck by the fact that when the disease is under control, pemphigus patients actually look healthier than the general population! During a subsequent meeting of the Los Angeles support group, I asked Janet Segall how the Foundation supported itself and how it planned to grow to serve additional patients. Janet, at that time, had no real experience in fund raising, so I volunteered to be the Fund Raising Chairman.

One of our first projects was to initiate the Annual Holiday Fundraiser in which individual patients approach family and friends during the Thanksgiving to New Years Holiday Season to provide support for the Foundation. This has been a very successful program over the past several years, as people are anxious to help friends and associates who are suffering from this serious and unusual disease. The Holiday Fund-raiser has allowed the Foundation to provide support to patients who need assistance with the disease.

Two years ago, I was asked to be on the Board of Directors of the National Pemphigus Foundation. Due to my background as a Bank of America loan officer, I was elected as Treasurer of the Foundation. Over the past six years, I have struggled with osteoporosis as a result of Prednisone use.

Several years ago, before Fosamax and Miacalcin nasal inhalant, I sneezed (one of those suppressed sneezes) and instantly compressed my spine four inches. This took many months to heal. In September 1999, I had a serious pemphigus flare, which was so bad that my local dermatologist resigned from my case, stating that he did not have adequate experience to deal with the disease. I contacted Janet Segall, who in turn contacted Grant Anhalt M.D. at Johns Hopkins.

Dr. Anhalt referred me to David Woodley M.D., who is cochair of the University of Southern California Department of Dermatology. Dr. Anhalt and Dr. Woodley have been friends for the past 20 years. The Foundation's referral to Dr. Woodley was worth every minute of my volunteer work over the years!

During my flare, I was hospitalized at the Norris Cancer Hospital, which is USC's facility authorized to provide chemotherapy treatment. I was being treated with Cytoxan, which is a chemotherapy agent. The "Cytox-an Protocol" included 750 mg a day of I.V. Cytoxan for four days (the dose is half of that given to a cancer patient), 100 mg of I.V. Prednisone, as well as daily plasmapheresis (blood plasma exchange).

Upon release from the hospital, I continued the Cytoxan Protocol on an interval of once every three weeks for four months, and then once a month for four additional months. Plasmapheresis was done three times a week for two months and then gradually extended to be done two days prior to the monthly Cytoxan protocol. My daily Prednisone dose peaked at 120 mg a day and has been significantly decreased at this point.

I continue to recuperate at home, and am hoping to return to work within eight months. During the long course of this illness, I have been blessed to have the unwavering support of my family, as well as much encouragement from my friends in the Foundation. My goal is to keep myself healthy so I can continue to help the Foundation reach out to others who are also in need of information and support.