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xan nowakowski


Dr. Alexandra "Xan" Nowakowski is a medical sociologist, public health program evaluator, community advocate, and peer counselor living with cystic fibrosis. You may recognize them from The CF Warrior Project book or various Cystic Fibrosis Foundation conferences. They have also worked with organizations like Attain Health and Rock CF Foundation to provide support for fellow LGBTQIA+ adults with CF. Being openly bisexual and agender, as well as multiethnic and part of "the 10%" of patients without mutations qualifying for CFTR modulator drugs, gives them unique insight into questions of inclusion and justice in CF community. Born in December 1983 with very rare CFTR gene mutations, Xan had a long and complex road to a conclusive CF diagnosis despite being sick since birth and having their first sweat test in early childhood. They now receive care at the Orlando Health adult CF clinic in central Florida. Xan also works full-time as an Associate Professor at the Florida State University College of Medicine regional campus in Orlando. In their work with FSU COM they spend a lot of time looking at connections between health and social life, and exploring how programs for people with different health conditions work. Their work focuses strongly on the experiences and needs of people aging with chronic diseases, which is basically studying what they know best! This includes work on CF specifically; Xan serves on the Governance Board of the CF Reproductive and Sexual Health Collaborative and consults on a variety of interdisciplinary health sciences research projects serving the adult CF community. In addition to living with CF, Xan deals with PTSD from a long history of intimate partner abuse. Their experiences of chronic illness and complex trauma have helped them make an impact for others. Along with their spouse Dr. J Sumerau, Xan runs an outreach project called Write Where It Hurts for scholars who bring their lived experiences of hardship into their professional activities. Xan holds a PhD and MS in Medical Sociology from Florida State University, an MPH in Health Systems and Policy from Rutgers University, and a BA in Political Science from Columbia University.

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