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Brandon Evans was 14 years old when he began missing school due to chronic nausea and vomiting. It took four years before he was diagnosed with a rare condition called eosinophilic esophagitis, an imbalance of a type of white blood cell. Three years later, Brandon finally found significant relief when he enrolled in a clinical trial pioneered by Marc Rothenberg, MD, PhD, at the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children's Hospital Medical Center. Today, Brandon is in college and enjoys playing basketball with friends and working out at the gym – things he missed out on for so many years.
Imagine being 14 years old and living each day with an undiagnosed condition that causes unexplained nausea and vomiting. You visit doctor after doctor, flying from one pediatric hospital to another, searching for reasons why you are in a near-constant state of nausea. Eighth grade passes and you miss more school days than you attend. Different drug therapies are offered but none seem to make a real difference. At least one physician suggests that the cause of the nausea and vomiting might be psychological rather than physical. High school is spent at home with weekly instruction provided by visiting teachers. It takes four years and countless appointments before a correct diagnosis is uncovered.
For Brandon Evans, it was just such a journey that took him from his initial symptoms at age 14 to the eventual diagnosis of eosinophilic esophagitis at age 18. And he's not alone. This rare condition commonly goes undiagnosed or misdiagnosed for long periods of time while patients battle with skeptical medical providers and unpredictably timed symptoms.
Eosinophilic conditions are caused by eosinophils, a type of white blood cell, found in above-normal levels in the blood or tissues. Typically, eosinophils move into an area of the body to respond to an infection or allergen, releasing toxic substances to fight off the foreign invader. However, when the body produces too many eosinophils the result is chronic inflammation, which can cause tissue damage.
"I never could really tell what the rhyme or reason was, sometimes I would get sick and I'd be sick for a few days before feeling better. Other times, I would get sick and it would last a few weeks without any relief," says Brandon.
Brandon grew up in Philadelphia, Pennsylvania, with his sisters Bethany and Maria and their parents, Walter and Kim Evans. For years he and his family looked for answers, trying to find and understand what was causing the unpredictable yet frequent nausea and vomiting that left Brandon unable to attend school, play sports or simply hang out with friends.
"My mother had the attitude that we would go anywhere and do anything to make me better," says Brandon. He recounts visits to various pediatric hospitals, traveling to half a dozen states, all in a search of an explanation for his condition.
Trying to maintain the illusion of a normal, healthy life proved impossible. "I never went more than three weeks without getting sick," says Brandon. A rocky 8th grade year led to home-bound instruction for his first three years of high school. "I tried to attend classes my senior year but it was tough."
In 2003, at age 18, Brandon was diagnosed with eosinophilic esophagitis during a visit to Chicago Memorial Hospital. "Now we had something to read about, something to learn about," says Brandon. Getting a diagnosis was a tremendous relief. "You reach a point and you just want to know -- it could be anything -- just tell me!"
The initial relief was short-lived. The family soon learned that medical solutions to the condition were few and that research into the disease was sparse. "I tried lots of things. One of the hardest was being on an elemental diet for six weeks. I could only drink a special formula. My stomach improved but I felt starving all the time! I didn't realize how much our society revolves around food until I couldn't eat...it was pretty tortuous," says Brandon.
Despite the unpredictable nature of his condition, life continued and Brandon made multiple attempts to register and complete a full semester of college. "I took a medical leave three times from the University of Florida because I just couldn't keep up with my classes," says Brandon. "Being sick all the time made it unfeasible to be in school."
Back in Philadephia and now 21 years old, Brandon found himself facing a life of uncertainty. "When I'm sick, I'm in bed and I don't feel like doing anything or talking to people or spending time with people, and that is very isolating," says Brandon.
After dropping out of college Brandon struggled with depression. "Having an illness where there isn't improvement makes it hard to think about the future or make any plans. It really prevents you from wanting to think ahead, or think long-term because there's so much uncertainly. It's taken me away from dreaming, or thinking about what I want to do in the future because there have been so many disappointments along the way," says Brandon.
Finally, hope arrived in the form of a newspaper article. In February 2006, Brandon's grandmother was reading a national newspaper and saw an article about a clinical trial being run by Marc Rothenberg, MD, PhD, director of Division of Allergy and Immunology at the Cincinnati Children's Center for Eosinophilic Disorders at Cincinnati Children's. In it she learned that Dr. Rothenberg was leading a ground-breaking study using intravenous mepolizumab to treat eosinophilic esophagitis. The family wasted no time. Brandon's physician in Philadelphia referred him to Dr. Rothenberg and within weeks Brandon flew to Cincinnati for his initial screening for the drug infusion protocol.
As a leader in treating and researching these conditions, the Cincinnati Center for Eosinophilic Disorders offered Brandon his first real hope for improvement. In a year, Brandon traveled five times to Cincinnati Children's to participate in Dr. Rothenberg's clinical trial. "Dr. Rothenberg's drug trial changed everything. Within a couple of weeks, I felt very noticeably different," says Brandon.
Living on the East Coast, Brandon had weekly contact with study coordinator Bridget Buckmeier at Cincinnati Children's. "She is great to work with, very kind and helpful," Says Brandon. In fact, he says that everyone he came into contact with from Cincinnati Children's was top-notch, from technicians in the lab where he had blood work done, to the nurses and physicians who provided direct care.
The new protocol has had a dramatic impact on Brandon's day-to-day life. Since beginning the study, Brandon re-enrolled in college. He's also holding down a job for the first time and is able to do many of the things he missed for so many years, such as going out to dinner, playing basketball with friends and working out at the gym. "Now when I make plans, I feel pretty certain I'll be able to see them through," says Brandon.
Is his life perfect? No. While Brandon says that his new regimen has made a huge difference, it's not a cure. "I still don't feel well pretty regularly, but the severity is nothing like it was before. Since I've been on the drugs, I've only been sick and in bed two to three times in the last year. That's a huge improvement."
Brandon Evans understands better than most people the values of patience and perseverance.
Brandon Evans understands better than most people the values of patience and perseverance. He recommends keeping a positive outlook when faced with a chronic disease like eosinophilic esophagitis, as there are encouraging things happening with new drugs and new treatments.
In Brandon's words: "There are doctors and researchers who are focused on this specific disease and they are making progress. Dr. Rothenberg is very motivated to do something about this condition and works very hard to make a difference."
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