How Does the Social World Shape the Experience of a Rare Disease? Social Position and the Development, Progression, and Medical Care for People with Amyotrophic Lateral Sclerosis

This dissertation focuses on the implications of social position and life course on the experience of Amyotrophic Lateral Sclerosis (ALS). Using a sociology in medicine frame, I test three theoretical perspectives (fundamental cause theory, social determinants of health, and life course theory) to determine the influence of social conditions on the development and progression of, and medical care for, people with ALS (pALS). Further, I use ALS as an exemplar of the need for a sociology of disease. Using the Amyotrophic Lateral Sclerosis National Registry, I first assess the association of social position with the reported onset location at the time of diagnosis of ALS. Second, I assess the influence of social position on the time between reported date of symptom development and diagnosis. The final study evaluates the odds of reporting several types of medical care dependent on the position in the life course. Results indicate that social position (race/ethnicity, gender, and education) influence the experience of the onset of ALS. Further, position in the life course is associated with the reporting of onset location, with those at older ages being more likely to report bulbar or global onset in contrast to limb onset. Position in the life course is also associated with symptoms of ALS, with older persons with ALS (pALS) experiencing symptoms earlier, often prior to diagnosis. Social position and position in the life course also influenced the adoption of life-extending medical care for pALS, with younger pALS adopting more of these interventions. Overall, the results indicate that even in a rare disease with an unknown cause, fundamental cause theory, the social determinants of health, and life course theory provide a valuable framework for understanding the experience of ALS. These theories, however, need refinement when used in the sociology of disease. Additionally, the results are evidence of a need for a sociology of disease. Finally, the results highlight the need for more inclusive research designs, as well as additional qualitative and quantitative work in understanding how social position shapes the lived experience of ALS