{"id":1345,"date":"2026-06-05T10:03:30","date_gmt":"2026-06-05T14:03:30","guid":{"rendered":"https:\/\/krieger.jhu.edu\/msh\/?post_type=profile&p=1345"},"modified":"2026-06-05T10:04:22","modified_gmt":"2026-06-05T14:04:22","slug":"sofia-grant","status":"publish","type":"profile","link":"https:\/\/krieger.jhu.edu\/msh\/profiles\/sofia-grant\/","title":{"rendered":"Sofia Grant"},"content":{"rendered":"\n

My research project looks at physicians\u2019 and patient advocates\u2019 roles in producing biomedical knowledge about autoimmune diseases in the twentieth-century United States. These diseases include rheumatologic diseases including rheumatoid arthritis, lupus, and scleroderma, as well as neurological conditions such as myasthenia gravis and multiple sclerosis. My archival research for this project took place at the McGovern Historical Center in Houston, the University of Michigan, Schlesinger Library at Harvard University, and the Mayo Clinic.<\/p>\n\n\n\n

I initially became interested in autoimmune diseases after writing my undergraduate thesis analyzing how diagnosis is portrayed in two medical documentary shows. The way patients in these shows sought diagnoses to validate their illness experiences resonated with my interests in the history of medicine and medical anthropology. In reading some of the secondary literature on autoimmune diseases, I wondered whether the gendered and racialized status of these conditions was one factor that may have led many early twentieth-century researchers to dismiss autoimmunity as biologically implausible.<\/p>\n\n\n\n

My current research builds on my second-year paper, in which I looked at the diagnosis of myasthenia gravis at Massachusetts General Hospital\u2019s specialized Myasthenia Gravis Clinic between the 1930s and the 1950s. During this research, I found several folders in a physician\u2019s collection with letters written by patients, which informed my historical interpretation centering patients with nonspecific symptoms who the Clinic excluded. My experience reading and analyzing these letters led me to search for more voices of patients and patient advocates in the archive, and to explore the roles and physicians, patients, and patient advocates in co-producing knowledge about autoimmune diseases.<\/p>\n\n\n\n

I was struck by arthritis\u2019s importance as a national and military priority at the same time as it existed in the public imagination as a disease that disproportionately affected older women. Until Dr. Philip Hench discovered in the 1940s that cortisone could ameliorate the symptoms of rheumatoid arthritis, the disease was a much-dreaded diagnosis because it was considered to be inexorably and permanently disabling. The U.S. was concerned with rehabilitating disabled veterans who had returned from World War II, and arthritis attracted much attention from the military and veterans\u2019 services. Physicians and health agencies commonly discussed arthritis and rheumatic diseases in terms of their social and economic costs and patients\u2019 ability to perform normative functions of womanhood such as cooking and cleaning the house.<\/p>\n\n\n\n

The importance of patients\u2019 embodied experiences in producing knowledge about rheumatologic diseases also stood out to me. Often it is challenging to find patients\u2019 voices in the archive, partly because the material is commonly filtered through the physician\u2019s perspective. However, in some instances I was able to find questionnaires that patients filled out for research on new diseases, and newsletters from patient-led organizations through which patients and physicians created shared bodies of knowledge about lupus and other autoimmune diseases by drawing on both scientific research and lived experience.<\/p>\n\n\n\n

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\"newspaper:<\/figure>\n\n\n\n
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Lupus News <\/em>Front Page, Lupus Foundation of America, 1997-1998. Bass & Howes Collection, Schlesinger Library, Harvard University.<\/figcaption><\/figure>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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Something that stood out to me in our current moment was the emphasis patient advocates placed on securing recognition from federal institutions such as the National Institutes of Health (NIH). In the 1990s, Florida Congresswoman Carrie Meek led a congressional hearing on lupus to raise awareness following the death of her sister from the disease. She framed lupus as a women\u2019s health issue, particularly impacting Black women, and sponsored a bill allocating funding for the disease. For many patient organizations, securing federal funding and support was a key goal for enabling research into lupus\u2019s causes and treatments and for garnering national attention to increase awareness of autoimmune diseases as a women\u2019s health issue among medical professionals and the general public.<\/p>\n<\/div>\n<\/div>\n\n\n\n

Additionally, I found it interesting to see how twentieth-century patient advocacy networks shared many similarities with the patient-led social media communities we see today\u2014first through the mail and eventually via the Internet. While these networks initially included mostly specialist physicians, they eventually came to include patients, family members, healthcare professionals, and public figures. For future research, I am interested in searching for evidence of informal networks through which patients shared knowledge about illness, and for evidence that patients contributed meaningfully to clinical studies of autoimmune diseases through their embodied knowledge.<\/p>\n\n\n\n

\"map
The Myasthenia Gravis Foundation\u2019s Map of Myasthenia Gravis Clinics in the United States. Conquest <\/em>Newsletter, Winter 1966, Martha Westerberg Papers, University of Michigan Archives.<\/figcaption><\/figure>\n\n\n\n\n","protected":false},"excerpt":{"rendered":"

My research project looks at physicians\u2019 and patient advocates\u2019 roles in producing biomedical knowledge about autoimmune diseases in the twentieth-century United States. These diseases include rheumatologic diseases including rheumatoid arthritis, lupus, and scleroderma, as well as neurological conditions such as myasthenia gravis and multiple sclerosis. My archival research for this project took place at the […]<\/p>\n","protected":false},"featured_media":1354,"template":"","profiletype":[87],"class_list":["post-1345","profile","type-profile","status-publish","has-post-thumbnail","hentry","profiletype-research-fellows"],"acf":[],"_links":{"self":[{"href":"https:\/\/krieger.jhu.edu\/msh\/wp-json\/wp\/v2\/profile\/1345","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/krieger.jhu.edu\/msh\/wp-json\/wp\/v2\/profile"}],"about":[{"href":"https:\/\/krieger.jhu.edu\/msh\/wp-json\/wp\/v2\/types\/profile"}],"version-history":[{"count":2,"href":"https:\/\/krieger.jhu.edu\/msh\/wp-json\/wp\/v2\/profile\/1345\/revisions"}],"predecessor-version":[{"id":1355,"href":"https:\/\/krieger.jhu.edu\/msh\/wp-json\/wp\/v2\/profile\/1345\/revisions\/1355"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/krieger.jhu.edu\/msh\/wp-json\/wp\/v2\/media\/1354"}],"wp:attachment":[{"href":"https:\/\/krieger.jhu.edu\/msh\/wp-json\/wp\/v2\/media?parent=1345"}],"wp:term":[{"taxonomy":"profiletype","embeddable":true,"href":"https:\/\/krieger.jhu.edu\/msh\/wp-json\/wp\/v2\/profiletype?post=1345"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}