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Patient Stories: Torry
"I had never even heard of Hypereosinophilic Syndrome or an eosinophil before my diagnosis. But
I don't let the disease prevent me from doing the things I want to do."
In a classroom at the University of Tennessee, the whiteboard is decorated with the graceful curves of parabolas, wave functions, and the neat logic of theorems and mathematical equations. It is a way of thinking that comes very naturally for Torry P., 26, who is teaching a class of freshman college students - a way of making sense out of the world and drawing certainty and predictability out of apparent chaos. But for Torry, his encounter with Hypereosinophilic Syndrome (HES) has introduced many uncertainties that have no clear solution.
In the summer between his freshman and sophomore year of college, Torry was working at a part-time job that required him to be on his feet much of the time. He started to experience swelling in his legs. He thought that he might just be standing too much, but the symptoms persisted and became worse. What followed was a quest for a diagnosis worthy of an epic novel. The doctors first looked at kidney disease, but the tests came back negative. They began to think that it was an absorption problem, which led them to look at his stomach. There they found a forest of polyps. It did not take long to find the eosinophils hiding in the polyps, but it took years before his doctors could find a label for Torry's disease.
Some physicians were very honest about not knowing what Torry's problem could be. One doctor after another had a different interpretation of what was happening. Many thought that it was an allergic reaction, and because of his severe gastrointestinal symptoms, perhaps a food allergy. He tried all sorts of diets, eliminating and adding different foods, but none of the diets seemed to help. Some doctors told him that he should be resigned to live with the symptoms. It was a frustrating experience. Finally, in August 2004, he was diagnosed with HES, five years after his first symptoms.
Torry had never heard of Hypereosinophilic Syndrome prior to this diagnosis. He had never even heard of an eosinophil, but, "It was a relief just to have a name for it even though it is a crazy long name that no one has ever heard of..."
HES is a very rare disease, and the information about it is very sparse. Torry found that through the Internet, he was able to connect with other people and doctors who have experience with the disease. He also turned to his mom, who is a nurse, for a lot of his information. She was able to dig into the research literature and other sources to learn about the treatment, its consequences, and long-term effects.
In order to cope, Torry has built a network of support around him; teachers who are willing to substitute for him, tutors who are willing to step in, and friends who are willing to run errands. His faith also provides steady support in the face of an unpredictable life. Since he can't know what may happen on any given day, many of Torry's original plans have been put on hold or put aside. He wanted to go to medical school, which would be a very intense and long-term commitment, but decided against that. Instead, he continued his math studies into graduate school, where he could maintain a flexible schedule that could be adapted to his needs. As a teacher, he arranged to teach two days a week, which reduces the chance that he would miss a class. A 9-to-5 job just would not work out.
Torry can easily envision what an effective treatment might bring: "I think the biggest difference would be the certainty that it would provide and the consistency from day-to-day." The right treatment, one that really works and does not have such terrible and unpredictable side effects, would make it easier to make long-term commitments. Maybe then Torry could look forward to the possibility of medical school, building his high school tutoring business, maybe even marriage and starting a family.