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Sunday, March 1, 2020

This Was Supposed to Be Endo’s Big Moment. What Happened?

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This Was Supposed to Be Endo's Big Moment. What Happened?

It got popular the way a lot of things do: celebrities and social media. There was Halsey on Instagram, posting, "For those of you who have followed this battle of mine...you know the extremes to which it can be mentally exhausting and physically painful....I'm in total agony right now." Alexa Chung wrote about how much it "sucks." Lena Dunham described it as something "eating me from the inside." Julianne Hough hid the "emotional trauma" from loved ones. Sarah Hyland called it "one of the most painful things I've dealt with."

So much star power and yet...nobody cared. Well, not nobody: Regular women cared—a lot. Especially those who have endometriosis and so many others who suspect they do. In 2018, "What is endometriosis?" was a top trending health question on Google (beat out only by the keto diet and ALS, another disease that has benefited from famous people speaking out on social). #EndoWarrior became a thing, used hundreds of thousands of times. There were fancy fundraising balls. A worldwide march. It was the kind of high-wattage awareness that often leads to better treatments, big breakthroughs, and major cash being spent to find a cure. Just like it has for conditions like Parkinson's and breast cancer.

Except, for endo, the opposite is true: At the same time that patients were getting vocal, the government was putting less money toward the debilitating disease, not more. Since 2016, funding for endo has dropped by millions of dollars.

This year, it's estimated to receive about the same amount as hay fever, which causes...stuffy noses. On the list of conditions kept by the National Institutes of Health (NIH), the largest federal agency responsible for medical research, endo is one of the least funded: number 276 out of 288.

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