One in ten people of menstruating age lives with Endometriosis, and yet it has many of the same problems as a rare disease.
Yesterday I went to the The Endometriosis Foundation of America's Patient Awareness Day to see talks on various aspects of the condition. Speakers and Q+A sessions featured "the lifecycle of endometriosis with topics focused on potential disease causes, early diagnosis, sex and fertility, treatment options, complementary pain therapies, comorbidities, and complications."
Highlights for me included the World Endometriosis Society's Secretary General, Lone Hummelshoj, talking about painful sex with endo; Jhumka Gupta MPH ScD talking about framing endometriosis as a public health and social justice issue; Peter K. Gregersen MD talking about the ROSE study and improving clinical care through research; and friend of the podcast, Abby Norman, talking about talking about living with Endometriosis.
In episode 16, Abby and I talked about her experience with endo, how difficult it can be to get it diagnosed, having others value her fertility and the satisfaction of her male sexual partners above her own health and quality of life, and the book deal she just signed to write about it. She's spending today and tomorrow at the Scientific Symposium Advancing the Science and Surgery of Endometriosis to research her book, FLARE.
In an upcoming episode in the podcast, Abby and I are gonna talk about it, but in the meantime you can check out my Storify of tweets from yesterday.
Endofound has now posted talks both from the Patient Awareness Day and Scientific Symposium on Vimeo. My favorites: