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 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, 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,” Becker said.
Dr. Ron Schey is the director of Neurogastroenterology & GI Motility Unit at UI Hospitals and Clinics. He says Eosinophilic Esophagitis is “an allergy of the esophagus. It probably is initiated by allergens in the air, in the food, and in general in the environment.”
Schey says many people may not even realize they have Eosinophilic Esophagitis.
“Today we know the prevalence is something like 1 in 5,000,” he said.
“I’ve been scoped over 40 times,” said Becker, referring to the esophageal scoping that makes a diagnosis possible. She has spent more than 300 days in the hospital in the last two years, and is again an inpatient at the UI Hospitals and Clinics. Most patients with Eosinophilic Esophagitis 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 Christopher, also an inpatient with symptoms of Eosinophilic Esophagitis. He keeps up with class work by toting textbooks to the hospital, and Skyping with his class and tutors.
Becker and Christopher bonded about their shared symptoms. “We instantly realized the similarities were crazy across the board,” Becker said. “We don’t have to explain what’s on your chest, what’s on your stomach.”
The two have feeding tubes, having gone at times to only elemental formula to stay alive. That’s a medical regimen 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 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.”
The UI is conducting a study, 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 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.