In Portland clinics, doctors trained in diverse healing traditions are learning to work together—and patients can feel the difference.
SOMETHING WAS WRONG with Ryan—Anne Nedrow could tell that as soon as she saw him. Her then-13-year-old son, usually so active and energetic, was supposed to go on a spring-break golf outing with a neighborhood friend, but he was too lethargic to even think about hitting the green. There was a peculiar smattering of red spots on his hip, and the whites of his eyes had a yellow cast.
Unlike most parents, Nedrow could rely on her professional experience to take stock of the situation—she is the medical director of Women’s Primary Care/Integrative Medicine at the Center for Women’s Health at OHSU, as well as an associate professor there. That, along with her maternal instincts, told her to get Ryan to the hospital as soon as possible. By doing so, she unwittingly embarked on a journey that would not only have profound implications for her son’s life, but would forever change her perceptions of the powers and limits of Western medicine.
At St. Vincent Hospital, tests showed that Ryan’s red blood cells were unaccountably disappearing and that his platelet count was dangerously low. Puzzled and concerned, his doctors transferred him to Doernbecher Children’s Hospital, where, a few days later, a bone-marrow biopsy revealed an unwelcome diagnosis: Ryan had a rare autoimmune disorder called Evans Syndrome, in which the hematic cells essential to circulation are progressively eliminated. In short, Ryan’s immune system was destroying his own blood.
“It was like that book by Joan Didion,” Nedrow says, recalling the opening lines of The Year of Magical Thinking. “‘Life changes fast. Life changes in the instant.’”
For the next three months, at home and in the hospital, Ryan fought the strange disease hour by hour, day by day. Evans Syndrome, which was first described in 1951, remains a medical enigma; its onset is typically sudden and unexplained, but its dominant feature is an errant immune system that attacks red blood cells (which transport oxygen) and platelets (which form clots and heal wounds). As a result, patients often suffer from anemia and uncontrollable bleeding. Treated with massive doses of steroids, Ryan’s condition initially improved, but then a period of troubling instability set in. Sometimes his symptoms, ranging from nosebleeds to fatigue to purple sores in his mouth, would recede; but then a relapse would occur and Ryan would be rushed back to the hospital. Despite copious blood transfusions, his platelet count wouldn’t stabilize, and late one night he suffered from gastrointestinal bleeding so severe that he lost four pints of blood. His doctors began to wonder if they would ever be able to stanch the flow. “I was desperate to find a solution,” Nedrow says.
One day, a colleague at OHSU—a clinical psychologist who also practices acupuncture—brought Nedrow a manuscript from an obscure compilation of Chinese medicine case studies that had been published in 1994. It described a condition identical to her son’s that had been successfully treated with traditional Chinese herbs. The paper presented Nedrow with a gnawing dilemma.