Local woman battling rare condition most doctors don’t know about

News

EL PASO, Texas (KTSM) — Imagine feeling extreme pain, going to the doctor, and being told there is absolutely nothing wrong with you. Instead of getting a reasonable diagnosis you get told it’s all in your head and you are simply trying to seek attention.

Well, that’s exactly what happened to one local teenager here in the borderland. 21-year-old Aubry Herrarte sought answers from doctors for what seemed like an eternity.

At the age of 16, Herrarte began experiencing unexplained joint pain and received many misdiagnoses from her doctors, and was even turned away while in pain.

“I was in extreme pain and I remember my doctors saying well we can’t do any more for you so we are just gonna send you home,” said Aubry.

Aubry and her mom feeling disbelief, defeat, and heartbreak.

“Doctors were saying there is nothing wrong…she loses feeling in her legs, can’t walk, can’t move. That was heartbreaking for me, to have an ambulance being at the house and to take her out in an ambulance, I didn’t know what to think I didn’t know what to do,” said Aubry’s mom, Kimberly Herrarte. “You know all I could do is cry because I didn’t know what was going on.”

“How could they just turn their back on a teenager who was in severe pain who didn’t have any feeling in their legs, and couldn’t walk?” said Aubry.

Finally, after 5 years of needles, inconclusive test results, and numerous hospital visits, a sigh of relief came for the Herrarte family.

“He finally sat down with us and told us she had Ehlers Danlos Syndrome-Hypermobility. It felt like a big weight had been lifted off of me because of the fact that okay we know what it is now, let’s find out more about it,” said Aubry’s mom.

Ehlers Danlos Syndrome, also known as EDS, affects connective tissues all over the body, muscles, tendons, ligaments, and more — taking over Aubry’s life.

EDS consists of 14 different subtypes, and is said to be found 1 in 5,000 people.

Although no cure has been found and friends and family have been lost along the way, the battle continues.

“We’ve actually lost some family because they don’t believe what is going on because people don’t believe this condition. And that’s what is hard for her and that’s where the awareness we would want to get out tell people this condition is real it is out there and they need the support just like anybody else does,” Kimberly Herrarte said.

The Herrarte family remains hopeful and wishes to continue raising awareness and learning more about this rare condition.

Adding that Aubry’s proudest moment so far has been being able to walk at her high school graduation.

KTSM did try to speak to Aubry’s doctors about this rare condition, but because it is something so new and rare, no doctor felt comfortable speaking on the subject until more information on EDS is found.

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