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Kailee Edelen Adjusts to Living with a Rare Disorder

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Kailee Edelen Adjusts to Living with a Rare Disorder

Senior Kailee Edelen sits in a hospital bed, before a surgery. (photo submitted)

Senior Kailee Edelen sits in a hospital bed, before a surgery. (photo submitted)

Senior Kailee Edelen sits in a hospital bed, before a surgery. (photo submitted)

Senior Kailee Edelen sits in a hospital bed, before a surgery. (photo submitted)

By Mattie Shea

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The smallest things can be taken for granted on a daily basis, such as ordering a pizza with some friends. Senior Kailee Edelen was once able to enjoy such a simple thing as that, but now after being diagnosed with gastroparesis, she can’t.

“In August of last year I was diagnosed with gastroparesis, which is a rare stomach motility disorder where basically your stomach is paralyzed and the food that you eat doesn’t really process well,” Kailee said.

To paint a picture of what this does to the body Edelen explained that sometimes she would eat a cup of mac and cheese before she went to bed. She would then wake up not being able to move without a tight bloated feeling that would last for up to four days all because her body couldn’t process food like it should. With no clue what was happening, and no family related medical history, Kailee set up an appointment with a doctor.

“Initially they thought it could be Crohn’s disease and that has been in our family’s medical history, but gastroparesis is a thing on it’s own,” Kailee’s mom, Traci Edelen, said.

To get an idea of what was happening to Kailee, a number of surgeries were done. Over the course of getting better she had a total of five surgeries. One surgery was a combination of three different surgeries at once, which included a endoscopy, colonoscopy and a pill camera. They also put botox in her stomach to create an opening.

“I wasn’t too nervous [about the surgeries], since it was mainly exploratory, but of course I was still a little worried that they might find something worse than they had originally thought,” Kailee’s boyfriend, Ethan Holtgrieve, said. “But mainly I was worried the results of the tests and biopsies would be bad.”

Moving forward, once the doctors diagnosed gastroparesis to Kailee, they explained there was a 70% chance it would eventually go away, but they couldn’t be sure.

“From this point its learning how to deal with it, I’m doing a diet rehabilitation where I add foods back in my diet in small portions at a time,” Kailee said.

Throughout the whole process Kailee and everyone around her had to adjust. Kailee had lost around 70 pounds in seven months and was going through piercing pain on a regular basis. Eventually it all caught up to her mentally, and a cloud a depression came over her because it felt like she was stuck with a rare disorder that no one knew anything about or how to treat it.

“The hardest part was watching your little girl go through so much pain anxiety and heartache,” Traci said. “As a mom you are supposed to be able to make things easier on your kids and knowing that I could do nothing to help was heartbreaking.”

Getting out of the “I can’t do this” state was due to the help of Kailee’s supportive parents and her boyfriend, through them she got to the “I can do this” mindset.

“You have to be thankful for what you have, even the small things,” Kailee said. “Now I can’t even just order a pizza with some friends.”

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Kailee Edelen Adjusts to Living with a Rare Disorder