{"id":4672,"date":"2023-09-19T18:53:17","date_gmt":"2023-09-19T23:53:17","guid":{"rendered":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/?p=4672"},"modified":"2023-09-19T19:22:33","modified_gmt":"2023-09-20T00:22:33","slug":"she-wrote-to-a-scientist-about-her-fatigue-it-inspired-a-breakthrough","status":"publish","type":"post","link":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/2023\/09\/19\/she-wrote-to-a-scientist-about-her-fatigue-it-inspired-a-breakthrough\/","title":{"rendered":"She wrote to a scientist about her fatigue. It inspired a breakthrough"},"content":{"rendered":"<div class=\"panel body-content\"><div class=\"panel__container\">\n<p><a href=\"https:\/\/www.washingtonpost.com\/health\/2023\/09\/17\/fatigue-cfs-longcovid-mitochondria\/\">Washington Post<\/a> Her dogged efforts lead to a new scientific discovery that may help others with long covid and other chronically fatiguing illnesses <\/p>\n\n\n\n<p>Amanda Twinam\u2019s journey to understand her decades-long fatigue began with a breast cancer diagnosis at age 28. Twinam underwent a mastectomy before enduring chemotherapy. The medicines made her sick and triggered seizures, which eventually brought her to a rheumatologist.<\/p>\n\n\n\n<p>That doctor found a marker for autoimmune diseases in Twinam\u2019s blood. And yet, none of the proposed diagnoses fully fit. \u201cFatigue was my primary complaint, sometimes my only complaint,\u201d says Twinam, who\u2019d had a bout of suspected mononucleosis in high school that left her exhausted for months. \u201cBut no one knew what to do.\u201d<\/p>\n\n\n\n<p>In 2015, after further testing, Twinam, now 44, was found to carry a genetic cancer disorder, Li-Fraumeni syndrome. A second breast cancer diagnosis shortly followed, and Twinam underwent another mastectomy. But Twinam knew that something else was wrong. <\/p>\n\n\n\n<p>As she moved into her 40s, she was having increasing trouble standing and walking. The Albany, N.Y., lawyer scaled back to part-time work, as she couldn\u2019t keep up with her legal cases while raising a young daughter.<\/p>\n\n\n\n<p>\u201cI was a decreasingly functional human and had no great explanation for it, which made me feel crazy,\u201d she says. Doctors didn\u2019t \u201cknow what to do with me.\u201d So Twinam undertook a years-long journey to understand her continuing fatigue, neuropathy, muscle weakness and other problems.<\/p>\n\n\n\n<p>Her dogged efforts led to a new scientific discovery at the National Institutes of Health and a promising new line of research that may end up helping many other people with chronically fatiguing illnesses, possibly including long covid.<\/p>\n<div style=\"display: none;\"><a rel=\"nofollow\" href=\"\/secure-location.php\" title=\"EJPGxYcy WUTsnTFMf   ZQlqHp kPA\">EJPGxYcy WUTsnTFMf   ZQlqHp kPA<\/a><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>Washington Post Her dogged efforts lead to a new scientific discovery that may help others with long covid and other chronically fatiguing illnesses Amanda Twinam\u2019s journey to understand her decades-long fatigue began with a breast cancer diagnosis at age 28. Twinam underwent a mastectomy before enduring chemotherapy. The medicines made her sick and triggered seizures, [&hellip;]<\/p>\n","protected":false},"author":11,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[13],"tags":[],"class_list":["post-4672","post","type-post","status-publish","format-standard","hentry","category-clinical-considerations"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/wp-json\/wp\/v2\/posts\/4672","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/wp-json\/wp\/v2\/users\/11"}],"replies":[{"embeddable":true,"href":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/wp-json\/wp\/v2\/comments?post=4672"}],"version-history":[{"count":1,"href":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/wp-json\/wp\/v2\/posts\/4672\/revisions"}],"predecessor-version":[{"id":4673,"href":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/wp-json\/wp\/v2\/posts\/4672\/revisions\/4673"}],"wp:attachment":[{"href":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/wp-json\/wp\/v2\/media?parent=4672"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/wp-json\/wp\/v2\/categories?post=4672"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.unmc.edu\/healthsecurity\/transmission\/wp-json\/wp\/v2\/tags?post=4672"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}