Narcolepsy 360: Sara Kowalczyk

Sara Kowalczyk is a mother and women’s health patient advocate, clinical researcher, regulatory writer and person with Narcolepsy. In this episode, Sara shares her diagnosis story but also her decision and experience in becoming a mother.

Claire and Sara discuss how Sara developed an expertise on narcolepsy and women’s health while going through two pregnancies with narcolepsy/cataplexy. She conducted a survey and has led support groups surrounding narcolepsy, pregnancy and motherhood.

Sara earned 2 masters-level degrees from Boston University in medical science and public health (epidemiology and biostatistics). She has conducted independent survey-based research studies on pregnancy perceptions and experiences, cognitive-related symptoms, and patient reported outcomes (the latter is called the Boston University Narcolepsy and Idiopathic Hypersomnia Patient Perspectives Study (BUNIHPPS). When Sara isn’t working on her passions related to patient advocacy, she is enjoying time spent with her family and adorable children, Brendan and Julia.

Sara recommends the following Facebook Groups: Xyrem Support group, Pregnant people with narcolepsy and mothers, Narcolepsy/cataplexy education focused group and BUNIHPPS.

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