Hope for Local Woman with Rare Disease

GRANTS PASS, Ore. — A rare medical condition is entering the national spotlight after it nearly caused an innocent father in Texas to serve a jail sentence for child abuse. Now a local woman is raising awareness about that same condition, and the equally rare surgery that could save her life.

Grants Pass resident Kelly Koep first experienced symptoms of Ehlers-Danlos syndrome, or EDS, at two years old. They’ve gotten worse ever since.

Now at 27, she survives on handfuls of medicine a day and holding her head up with a neck brace.

“The pain is one thing, but not being able to do what you want to do is scary,” said Koep.

About one in 5,000 people are estimated to have some form of EDS. Recently it achieved notoriety because its symptoms — frequently broken bones, bruising, and constant pain — are easily mistaken for abuse.

Koep’s family found that out the hard way when she was child.

“She jumped off her bed and she tumbled, and her elbow got dislocated,” said Koep’s mother Wendy. “They would not let me take her home, and they were going to call child services on me for child abuse.”

It’s a reality Koep and her family will have to deal with for the rest of her life. But while there is no cure, there is hope. A handful of doctors can perform the fragile spinal surgery needed to ease Koep’s symptoms.

Hers is scheduled for Christmas Eve.

“I should be able to walk. I should be able to just do basic activities,” said Kelly.

Koep says she likely will never be able to work or have kids. But for someone whose life has been confined to a chair, basic activities never sounded so sweet.

“I can’t even express how it makes me feel just thinking about it,” said Koep. “Just happy.”

Koep’s surgery will be in Maryland this month. After a long fight she was able to get it covered by insurance.

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