The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress

3 Vital Factors in the Making of a Masculine World

81 chapter three Vital Factors in the Making of a Masculine World In November 1953, the Saturday Evening Post published a six-page illustrated essay bearing the provocative title: “I’ve Got the Lonesomest Disease!” (fig. 3.1). In most respects, this essay resembled many other journalistic treatments of hemophilia in the two decades after World War II. It highlighted the importance of blood donation and transfusions for hemophilia patients, recent efforts by hematologists to understand and treat the bleeding disorder, the social isolation that patients often experienced, the hereditary and sex-linked nature of the condition, and even the familial challenges of raising afflicted boys into well-adjusted men. Yet this magazine feature was also unique, in that its author, Helen Furnas, was a selfdescribed “bleeder.” Written at a time when hematologists reserved hemophilia diagnoses for boys and men, Furnas’s essay provided a firsthand female perspective on a condition that physicians and scientists had traditionally framed as a male problem.1 This chapter explores how hemophilia’s development into a treatable bleeding disorder was intimately related to its status as a male disease. Helen Furnas’s bleeding disorder was what hematologists today call a clotting factor XI deficiency. It is sometimes categorized as a rare type of hemophilia— hemophilia C—although hematologists in the 1950s debated if this new pathology should really count as a true form of hemophilia. A key point of contention was the fact that the disorder, unlike the two more common forms of hemophilia, occurred equally in both male and female patients. figure 3.1. “I’ve Got the Lonesomest Disease!” Saturday Evening Post, 1953. Source: Helen Furnas, “I’ve Got the Lonesomest Disease!” Saturday Evening Post, 226 (November 21, 1953): 24. Reprinted with permission of The Saturday Evening Post Society, Inc. (© SEPS licensed by Curtis Licensing, Indianapolis, IN. All rights reserved). Vital Factors in the Making of a Masculine World 83 First described in early 1953 as “plasma thromboplastin antecedent (PTA) deficiency,” factor XI deficiency manifested as a mild-to-moderate case of classical hemophilia. Nosebleeds and bruising were common among the handful of known patients, and some female victims experienced prolonged bleeding during menstruation or following childbirth.2 These patients lacked the debilitating joint bleeds that were so common in severe hemophilia , but their condition was far from innocuous because trauma or surgery could lead to a life-threatening bleed. Before the discovery of PTA deficiency, hematologists were content to identify patients such as Furnas quite simply as “bleeders.” The meaning of the hematologist’s technological ethos for female and male bleeders in postwar America stands out today because the 1950s were a pivotal decade in the making of the world of modern hemophilia management. The spirit of progress associated with this era is readily apparent in Furnas’s account and indicates how laboratory and clinical research on blood clotting was beginning to make a discernible difference in the way bleeder patients experienced both modern medicine and society. In fact, the title of Furnas’s essay pointed astutely to the tension between the loneliness experienced by bleeder patients in the mid-twentieth century and the way hematologists— bolstered by transfusion medicine and the recent discoveries by blood coagulation researchers—could help combat the estrangement occasioned by any serious bleeding disorder. Postwar hematologists envisioned the promise of their specialty in their capacity to help patients and families achieve some normalcy in their lives. They believed that their expertise and technologies could help bleeder patients cope with a risky world and better integrate themselves as productive members of society. In short, Furnas’s perspective on this emerging world was unique as well as representative. Her identity as a female “hemophiliac” was marginal in the sense that her gender, sex, and age put her at the periphery of an emergent treatment community that focused largely on a male pediatric population. Yet, as Furnas herself acknowledged the sickly boys and young men with classical hemophilia had greater need than she and other female bleeders did. The title “I’ve Got the Lonesomest Disease!” thus had a double meaning. On the one hand, it emphasized the loneliness experienced by the young boys who suffered from the severest of all bleeding disorders (classical hemophilia); on the other hand, it highlighted Furnas’s marginal status within an emerging hemophilia community that often did 84 the bleeding disease not provide equal recognition or...