دانلود کتاب مرواریدها و اسطوره های یک پزشک در روماتولوژی

When I was a child in the second grade, my mother developed an acutely painful index finger on her right hand. After several sleepless nights with unrelenting pain that was disguised from me, she was admitted to the hospital. The surgeon suspected a glomus tumor—a benign growth that sometimes develops in the nailbed. But no tumor was found at surgery. Instead, the surgeon shared an astonishing observation with my father: “When I removed her fingernail, she didn’t bleed.” And at that point, the nature of her disease began to dawn on her doctors and on my father, who was himself a physician. My mother had developed Raynaud’s phenomenon as a teenager. When she and my father were newlyweds and he was a medical student, they had mused together at the oddity of her intermittently pale white fingers, which developed sometimes even in the summer. Around the time I was born, she suffered from a skin problem that I learned—years later—was dermatitis herpetiformis. As a young boy, I remember her scratching her intensely itchy legs. As I grew up, I became aware of the subtle scars left on her face, usually well-hidden with makeup. The active skin inflammation faded after a few years, but other aspects of the autoimmune kaleidoscope came into sharper focus. The ischemic finger in the context of her preceding issues led to the diagnosis of scleroderma. In that light, most of the medical events in my mother’s life make sense now. Her finger hadn’t bled at surgery because of the severity of vasoconstriction. The shapes of her fingers that I can still see and remember dearly, including the curved fingernail that never grew back normally, were the result of her disease. The calcinoses and digital pitting that developed in her fingers were also consequences of her slowmoving but relentless illness, as were the intermittent bouts of dysphagia caused by esophageal dysmotility. For a time, during my teens, my mother often had to excuse herself from the dinner table because she just couldn’t swallow her food. A painful memory for me. Despite that, Mom led a full life and it seemed to most that nothing slowed her down: raising two rambunctious boys; being a loving wife and returning to graduate school; becoming a devoted first-grade teacher; using her hands constantly in spite of sensitive fingers on sewing, knitting, cooking, and playing the piano; enjoying lifelong friends; attending our soccer games with mittens on to counter Raynaud’s attacks; and delighting in family travel. It all came to a halt far too early. When I was a medical intern, the hospital operator paged me to return a call from my father. Mom had developed an acute bowel obstruction because of scleroderma gut and had been taken to surgery that morning. I flew home, to her bedside in the intensive care unit. There, far more fragile that anyone had realized, she died twelve days later of adult respiratory distress syndrome. The real cause, of course, was scleroderma. She was 54 years old. It is little consolation that traumatic health events in one’s family make a physician a better doctor. Yet it is true. My mother’s nearly lifelong struggle with scleroderma—ironically regarded as “limited”—helps me understand the uncertainties, frustrations, and tears of my patients and their families. Mom’s illness, of course, contributed to my becoming a rheumatologist and dedicating my career to helping patients address diseases like hers. It is only fitting, then, that this book is dedicated to her.