Rare Disease Spurs Rare Friendship

By Ashley Hinson, Anchor/Reporter

CEDAR RAPIDS- Aly Becker isn't your typical 21-year-old. The Cedar Rapids woman has grown up all too fast, thanks to a daily medical regimen that would make anyone's head spin.

"That basket is pretty much a days' worth of what I use," she said, pointing to a wicker basket filled with plastic medical tubing and parts.

When she was in high school, the student and athlete noticed she couldn't keep up. That's a feeling that continued as she attended the University of Iowa

"I was already doing marching band there... and I felt so sick," said Becker, who is now on leave from school. It was months before a number of tests came back with the real reason she couldn't keep food down and had lost pound after pound. She has very severe case of Eosinophilic Esophagitis (EoE), among other medical conditions.

"You shouldn't have any eosinophils which is a type of white blood cell, in your esophagus or your GI system. I had very large amounts," said Becker.

Doctor Ron Schey is the Director of Neurogastroenterology & GI Motility Unit at University of Iowa Hospitals and clinics. He says EoE is "an allergy of the esophagus. It probably is initiated by allergens in the air, in the food, and in general in the environment."
Dr. Schey says many people may not even realize they have EoE. "Today we know the prevalence is something like 1 in 5 thousand," he said. "We know the prevalence and the incidence are rising probably because there are more cases out there, but probably because there is more awareness."

"I've been scoped over 40 times," said Becker, referring to the esophageal scoping that makes an EoE diagnosis possible. She has spent more than 300 days in the hospital in the last two years, and is again inpatient at the University of Iowa Hospitals and Clinics. Most patients with EoE can tolerate some form of oral eating, but her case is extreme.

Amid all the tests, poking and prodding and scoping, Becker met another patient dealing with the same chronic symptoms as her. Because of health privacy laws, the nurses weren't able to tell her there was someone like her; they could only hint. The chance meeting happened, and a new friendship formed with 8-year-old Christopher Turnis of Dubuque.

"Someone has the same disease as I do, but on the other hand I wouldn't want her to have that disease," said Turnis, also inpatient with symptoms of EoE. He keeps up with his class work by toting textbooks to the hospital, and Skyping with his class and tutors.

Becker and Turnis bonded over their shared symptoms. "We instantly realized the similarities were crazy across the board," said Becker. "We don't have to explain what's on your chest, what's on your stomach."

Both now have feeding tubes, having gone at times to only elemental formula to stay alive. That's a medical regimen Dr. Schey says is "not very tasty, and it's quite challenging."

It's also quite expensive. The cost of that formula can average more than 70 dollars a day, and for some who are paying it out of pocket, that adds up.

"His sole source of nutrition is the formula, and without that I don't know where he'd be," said Kristina Turnis, Christopher's mom. "We had to pay it out of pocket for the first six months after he was diagnosed. Our Insurance wouldn't cover it. They didn't consider it a medication."

His mother is right by his side at the University of Iowa Children's Hospital.
"I'm nurse slash mom slash teacher slash referee," she said.
Illinois and Minnesota both have laws mandating elemental formulas be covered by insurance when medically necessary. Nebraska has a bill currently in committee in the state legislature. Iowa Lawmakers we asked say there is nothing in the pipeline here.

The University of Iowa is conducting a study right now, hoping to help patients like Becker and Turnis. "I hope we'll be able to find treatment to ease the flare-ups when they occur, and to make sure we can prolong the remission time," said Dr. Schey, who is helping administer the study .

In the meantime these two patients remain connected, as they deal with a rare condition. "Christopher and I have a bond with each other that's just amazing," Becker said.

For more information about the clinical trial: http://clinicaltrials.gov/ or http://www.uihealthcare.org/clinicalresearch/
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