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197 C H A P T E R S I X Ordering Illness: Heterozygous“Trait” Suffering in the Land of the Mild Disease In early December of 2003 the newly formed Senegalese Association for the Fight Against Sickle Cell Anemia (ASD) convened for the first time. The form of the forum was to be a dialogue between the principal member of the nascent group’s scientific advisory counsel, Dr. Diagne, and the mothers of his small patients. Diagne addressed the essentials of sickle cell care in Senegal: details of “crisis” prevention and assuaging the hallmark symptom of the disease, pain. Shortly into the discussion, one of the mothers seamlessly left the topic of her child’s pain, broaching that of her own. Her concern, quite naturally—or so she thought—was how to care for her child when she herself was in “sickle cell crisis.” The doctor quickly corrected her by pronouncing her a sickle cell carrier (un porteur sain), meaning, he reiterated, that she was healthy. In differentiating “AS,” or sickle cell trait, from the disease, “SS,” those with the trait, he professed, “were not sick.” Several of the women looked to each other in defiant solidarity and protested. “With all due respect,” they insisted, the doctor had it wrong. He, however, held his ground and pleaded with them to see their own “health” compared to their children’s “disease.” They refused. Outside as the women parted ways, they reran the highlights of their personal experiences of pain aired in the discussion. Nonetheless, a meddling realization escorted them home in their disbelief. Had they achieved their years-long struggle of establishing a patient interest group with this local specialists only to have him potentially dissolve one of their most subjective “interests”— that of their own pain? Was it possible that modern science could allow them to be labeled drépanocytaires AS (HbAS sicklers), but would not allow them to suffer with the pain that they understood and lived as central to this condition? Had they “mis/recognized” themselves (Haraway 1997, 50) in the cross threads of a familiar discourse that was now becoming strange? In the world of sickle cell, specialists in the United States and France agree that, under normal physiological circumstances, sickle cell trait is a “benign” condition (Sears 1994) of “asymptomatic” character (Benkerrou, Denamur, and Elion 2003, 296; NHLBI 2002, 10). In this Western literature on sickle Chapter Six 198 cell trait, the designation “HbAS,” signifies the heterozygous phenotypic state, or the “sickle cell carrier.” The “A” conveys normal “Adult” hemoglobin (HbA), while the “S” stands for “Sickle” hemoglobin (HbS). This combination (HbAS) is thought to code the carrier as one who quantitatively possesses blood with up to 50 percent “S” hemoglobin, with the potential to sickle, and 50 percent normal hemoglobin, thought to compensate for, and stabilize, any disease effects. Despite these percentages, those with HbAS in North America are said to be “healthy-carriers.” They may feel little to no bodily symptoms, but depending on the genetic status of their partner, they can pass the sickle cell trait or the disease onto their offspring. Yet, like the women of ASD and others to be presented here, some Americans experience their status as “healthy carriers” as all too hyphenated since there have been periodic reports that people there suffer dramatically from symptoms that both differ from and greatly resemble those of sickle cell disease (HbSS) as well (see Kark 2000 for a review). In the United States, evidence of sickle cell trait suffering may be garnered from seemingly fleeting anecdotes described in sports medicine, clinical military journals, and congressional testimonials for early sickle cell testing legislation. It could be that such cases are statistically too rare to warrant real attention, while many of them seem to be the result of physical exertion, heat exhaustion, or other “non-normal” physiological conditions. The scarcity of this reporting, however, might also be understood in light of the lack of a cultural “option” to be sick with sickle cell trait in the United States. Here I am referring to the negation of the possibility that was instantiated by the social-political work that went into making sickle cell trait a “non-disease” (Hampton et al. 1974) amid “the sickle cell controversy” in post–civil rights era America (Gary 1974), which was provoked by a National Research Council (NRC) investigation of the trait. Despite the fact that the NRC committee “concluded that data on the topic of pathologies associated with...

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