Surviving Medical Care: A Mastocytosis Patient's Journey in the Medical System

Author Ruth Brown was born with mastocytosis, a rare, complex, and little-known disease responsible for producing a multitude of diverse symptoms. As a result of her condition, she experienced many incredible encounters with medical professionals and institutions. In Surviving Medical Care, she writes of the nearly fifty-five years she spent seeking medical attention for a series of seemingly unrelated and sporadic symptoms. While living a relatively normal life as a wife, mother, and software developer, she coped with the challenges of her affliction. As her condition worsened, she desperately sought a correct medical diagnosis and appropriate treatment. In her frequent visits with medical professionals, her care ranged from outstanding to poor and even horrifically negligent. Despite numerous obstacles, she never lost her optimism or her sense of humor. In this memoir, Brown shares how her extensive experience as a patient exemplifies pitfalls of medical care in the United States. Her problems arose not from a lack of excellent medical coverage but from a variety of other problems: physicians with poor communication skills; unnecessary, costly and invasive testing; medical personnel not trained to think logically or creatively; tight schedules in physicians' offices; overcrowded and understaffed emergency rooms; and indifferent physicians. While Surviving Medical Care narrates Brown's personal story, it has much to say about how Americans need to be involved in their medical care and advocate for improvements in the medical system.