by Michael J. Main

I remember like it was yesterday, fall of 1990, approaching my 31st birthday and our 5th wedding anniversary, holding my wife and she holding me. The comfort of our arms around each other, tears ran down my face. It was the first time we shared such an emotional release. Men simply do not show emotion, even in times of challenge such as this - being diagnosed with a "potentially fatal and debilitating disease."

July 1990, just three months earlier, blisters began appearing in my mouth and right eye. A family practice physician assured me the blisters in my mouth were mucous cysts and were nothing to worry about. Later, three more family practice doctors, working as a team, prescribed antibiotics and referred me to an ophthalmologist for the eye. The ophthalmologist promptly diagnosed herpes and proudly brought in an intern to witness my symptoms.

After both the antibiotics and the ophthalmologist's Rx failed to improve the increasingly painful lesions in my mouth and eye, an internal medicine specialist and periodontist referred me to an oral surgeon. The oral surgeon put me on an elimination diet of brown rice to test for food allergies. As if I hadn't lost enough weight already, my weight fell to a rail-thin 170 lbs on my 6'2" frame. The elimination diet did not improve the still worsening sores.

Finally, a biopsy was performed and the oral surgeon diagnosed pemphigus vulgaris. It was described to me at the time as "a potentially fatal autoimmune disease, which could be controlled by corticosteroids that can also be debilitating."

He assured me that my normally very busy and athletic life-style would be curtailed by the disease and its treatment. Indeed, he was very specific in predicting I would never race in triathlons (my passionate hobby) again, let alone compete in my dream event: the Ironman.

Treatment went like this: five years of up to 100 mg of Prednisone daily and five mg of Methotrexate four days per week. I flared three times while tapering off the medication (each time going back up to 100 or 80 mgs to begin the taper again). Since 1996, I have been mostly free of medication, other than one flare last year which put me back on Prednisone for five months. Based solely on personal discretion, I still use temovate gel on my gums when needed. I have tried lots of different alternative approaches to the disease.

Acupuncture eliminated all my lesions for the first time since my original diagnosis. Unfortunately, cost and the acupuncturists' inability to maintain success in treatment caused me to stop. I know all of us are different, yet if you asked, I think meditation on the thought of "pure love" - in retrospect, the feeling of crying into my wife's arms and sharing my vulnerability while being totally loved and accepted is my greatest medicine - which brings this article to a peculiar twist.

For five years, I fought the disease. In fact, I fought quite a bit - my mortality, my marriage, my job and the reality of my circumstance. In 1993, I even did an Ironman triathlon: 2.4 mile swim, 112 mile bike, and 26.2 mile run. I proved the doctors were wrong about me, that PV was not going to limit me any more than any other event in my life.

Peace, inner peace, on the other hand has crept into my life since those turbulent days. Family, a loving and connected relationship with my wife Esther, my three young sons, nature, and connection with others all receive significant focus from me. The pursuit of worthy goals, like higher education, economic success, and athletic accomplishment still remain important, but for different reasons. When a good friend in California invited me to compete in another Ironman this summer, the answer was yes.

Forgive the cliché, but while lovingly connected we still need to seize the day: carpe diem. Only this time the Ironman would be for more than proving the doctors wrong.

The "Ironman for Charity" was born! You see, everyone I have an opportunity to speak with, both personally and professionally, I tell the story of how the diagnosis of pemphigus was made and how doctors misdiagnosed the symptoms for too long. They hear about how fortunate I am compared to others who have much more serious symptoms. They also hear about what a tremendous job the National Pemphigus Foundation is doing to educate others and provide a catalyst to support groups internationally.

Then they hear that the Vineman "Ironman" is being run for donations to the Foundation. Initial results from the campaign show that 92% of the people solicited will agree to sponsor me in the triathalon.

This event will raise thousands of dollars for the Foundation. If I can swim 2.4 miles, bike 112 and run 26.2 in one day and be healthier for it, then certainly the goodness in people's hearts will guide them to give to such a worthy cause. Life is after all a gift. It is our job to live it to the fullest. Feel free to call me at 630-579-0134 or write me at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it .

At the time of this article, Mr. Main had raised $7,837 for the Pemphigus Foundation and the YMCA combined. The Naperville Metro, The Naperville Sun, The Daily Herald and The Chicago Tribune newspapers ran his story complete with a photos. Pemphigus and the Foundation are prominently mentioned in all the articles.