David Baron: Diagnosis and Hope
Our “Inspiring Hope” series shares patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. Our fourth story comes from David Baron in Chicago, IL.
My story starts in 2004. I was a happy, healthy 28-year-old enjoying my life. I was an airline pilot working my dream job, and life could not have been better. All that changed when my body decided to attack itself. I was on a layover in August 2004, when I woke up with a nasty sore throat. It felt like I had swallowed broken glass and I thought I had strep. I had one flight home, and I went straight to urgent care. The doctor told me that my tonsils were ulcerated, it was likely viral, and it would clear up in a week. After one week, my tonsils healed, and I went back to work.
Things were good for about a month, then my sore throat came back even worse. This time, I went to an emergency room. The nurse did a strep test, and when she pulled the swab out of my mouth, it was covered in blood. Shocked, she quickly left to get the doctor. A number of x-rays and exams were performed, and about 15 vials of blood were taken. All of the test results came back normal, and the doctors didn’t know what was wrong. They recommended I see an ear, nose, and throat (ENT) specialist.
When I saw the ENT the following week, he told me it was bacterial and that I needed antibiotics. I was on and off antibiotics for the next three months, and the sores in my mouth appeared and disappeared every few weeks. By late 2004, my ENT told me I needed to have my tonsils removed. As an adult, the recovery from that surgery was not easy.
Things seemed to be better for a few months, but in late February 2005, the sores in my mouth returned. I felt it was time for a second opinion. I found a new primary care doctor who told me, “I don’t know what you have, but I’ll help you find out.” That was something I needed to hear. Even though I didn’t have answers, I felt better that I had a doctor willing to admit that they didn’t know.
My mouth sores continued to get worse, and my doctor continued running tests that all came back normal. Eventually it got so bad that I had trouble eating and drinking, and I became dehydrated. I was admitted to a local hospital. I had a team of infectious disease doctors working on me. They tested over 20 vials of blood each day, and again the results came back normal. I was sent home without any answers.
A week after I came home from the hospital, I started getting blisters on my chest. My primary care doctor referred me to a local dermatologist, and I will never forget that appointment. The dermatologist walked into the office, saw my chest, and said, “I know what you have, it’s very serious, and I can’t treat it.” He referred me to the University of Chicago and wrote the words pemphigus vulgaris on a piece of paper.
The first thing I did after that appointment was search online for pemphigus. The first result I found scared me. It said that if the disease didn’t kill me, the treatment would. Luckily, the second result was the International Pemphigus and Pemphigoid Foundation (IPPF). The IPPF website had significant information on treatments and living with pemphigus. While I was still scared, the information I found helped me feel more at ease.
I was now under the care of a dermatologist who had treated pemphigus before, but the initial treatments were not working. I was still continuing to get worse every day. One particular low point was the day my treating doctor walked into my hospital room and said, “I don’t know what other treatments to try.” When I was at my low point, the IPPF was there for me. I needed to find an expert, and the IPPF helped. Through the IPPF I found one of the most knowledgeable dermatologists in the world. I emailed him on a Monday, and he replied within 30 minutes, asking if I could come in two days later to see him. Thanks to that doctor and the IPPF, I not only recovered, but I spent 13 wonderful years in remission.
Even today, the IPPF is still there when I need them. I recently had a flare, and after spending 13 years in remission I needed to find a new treating dermatologist. With the help of the IPPF and the Find a Doctor map, I was able to find a very knowledgeable new doctor. Any time I’ve needed help, the IPPF has been there for me.
David Baron is a pilot for a major airline in the United States. He lives in the Chicago area with his family.
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