Woman With Rare Condition Says Social Media Saved Her Life

October 20, 2016


An Evansville woman suffering from an extremely rare condition feels as if Facebook saved her life.

Natalie Embry’s condition is so rare, it affects only 1 in 10 million. She says it took more than 30 years to receive this diagnosis and it was Facebook that helped lead her to it.

“I can say that social media honestly saved my life,” Embry says.

She always knew something was wrong. After years of seeing doctors, the proper diagnosis always eluded her. But that all changed about a year ago when Embry was on Facebook. She started seeing pictures and stories…stories that she says seemed all too familiar.

“I knew I had it,” Embry says. “I was looking at people that looked like me. It was like a tribe that I definitely belonged to.”

This ultimately lead her to her diagnosis of Lipodystrophy, a rare metabolic disorder that causes improper storage of fat.

Embry connected with a woman through a closed Facebook group, then to find the woman was from Indiana, making them the only people in the state with this rare disease.

“Because of my Facebook friend I got into this doctor and I wouldn’t be here today if it weren’t for what I had learned on that Facebook page,” Embry says.

Thanks to Facebook and her doctor, Dr. Elif Oral, Embry was able to not only find out what she had, but connect with people who were going through the same thing she was.

Embry says, “I have my family and I have my rare family and I can call them day or night, I can get information. They know what it was like to grow up with this.”

Her husband Ryan Embry agrees. “Just the friends that she’s made through social media through Facebook especially it’s really…you can’t exaggerate how much of a difference that has made in her life.”

For a disease to rare, some may feel isolated. But thanks to social media and pages like Lipodystrophy United, isolation doesn’t cross Embry’s mind.

“There’s been grief and there’s been sadness but she’s going to fight,” Ryan Embry says.

Embry says she thinks social media is revolutionizing health care and wants to share her story, focusing on raising awareness so that people can get a diagnosis early on.

Copyright 2016 Nexstar Broadcasting, Inc

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