New Jersey

Rare Disease Leaves New Jersey Teen Unable to Eat

For the last two years, Sara Gebert hasn't been able to eat.

That's because the 19-year-old from Hunderton, New Jersey, has a rare and incurable medical condition called Chronic Intestinal Psuedo Obstruction that tricks her body into thinking any food making its way through her digestive tract is an intestinal obstruction.

Only about 150 people worldwide are diagnosed with CIPO each year. The condition is so rare that it took visits to multiple doctors and hospitals before medical professionals were able to figure out what was going on inside Gerbert's gut.

Before she was diagnosed, she would vomit as many as 60 times each day and was so weak at times that she couldn’t get out of bed.

"At the very end, I was eating pretzels, granola bars and drinking water and that was making me sick," Gebert's says.

For the rest of her life, Gebert's will be fed through an implanted tube, which pumps nutrients into her bloodstream every night while she sleeps. She also uses a bag to drain the digestive contents of her stomach.

She’s lost 30 pounds since her diagnosis and had to drop out of Fairleigh Dickinson University, where the former high school pitcher had an offer to play intercollegiate softball.

Gebert's said she tries to remain grateful for the remedy, but admitted some days are more difficult than others.

"There are days where you're just like, 'How am I going to do this every day for the rest of my life, I don't want to do it,'" Gebert says.

Now Gebert is trying to raise awareness for the condition. She and friends created a nonprofit called Sara’s Army that sells wristbands and maintains a website and social media profiles to educate people about CIPO.

She said the group has already had some success.

"It's been cool to see the light bulb turn on in people and say, ‘Oh wow I get this'," she said.

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