For Teen With Eosinophils of the Esophagus, Food Is Forbidden

May 10, 2012— -- Samantha Pecoraro can't enjoy the pizza and chocolate other teens crave. In fact, she can't eat any food except plain potatoes and is fed elemental formula through a gastrointestinal tube.

"I am on the strictest forms of treatment," the Florida 15-year-old tells the world in a YouTube video. "All my food has been taken away. I only want to be a kid."

Sam has eosinophils of the esophagus (EoE), an autoimmune disease that causes her white blood cells to attack food as it passes down the digestive tract. Eosinophils are implicated in numerous inflammatory processes, especially allergic disorders. It is a chronic condition with no known cure.

"I miss Mac and cheese and chicken fingers and salads and artichokes and broccoli," she told ABCNews.com.

But if she were to dare to eat them? "I would have extreme vomiting, nausea and diarrhea and I would be extremely tired and my throat would hurt," said Sam

An estimated 1 in 1,000 are affected by EoE -- about 200,000 Americans, according to CURED, the research foundation that Sam supports and she hopes will find a cure.

In a world where food is the centerpiece of family and society, Sam's disease is physically and emotionally disabling.

"It breaks my heart," said Sam's mother, Susan McCarthur of Cape Coral, Fla. "She just turned 15 and she could not eat birthday cake. During celebrations, she can't eat Christmas cookies or a turkey dinner. She just sits there and eats potato.

"I worry about when she is older -- what happens when she meets a guy and he wants to take her to dinner?"

Because Sam is allergic to so many foods, she subsists on a special formula that costs $51 a can -- at 44 cans a month that costs her family more than $2,200.

But that doesn't stop her from dreaming big. Sam is the star of her culinary cooking class and wants to be a professional. She calls herself the "blind chef," because she can't taste the dishes she makes.

"She gets her drive because she is a very persistent, strong kid," said McArthur. "She has always been that way. Sam is always willing to tell and share her story to anyone who will listen."

The disease has only emerged as distinct disorder since 1999, according to Sean Jameson, program manager for the Cincinnati Center for Eosinophilic Disorders, which treated 598 patients last year.

"The numbers are not huge, but the impact is," said Jameson. "They have dinner and lunch with their friends and go to football games -- everything is about eating."

"Teens can't have pizza with their peers and have to watch them eat at school," he said. "Some teens, who are awkward anyway, have to go on formula and sometimes get a gastric tube that is visible."

Doctors unfamiliar with the disease often misdiagnose it, according to Jameson. The only way to confirm EoE is by an endoscopic biopsy followed by microscopic analysis.

The disease, which has a genetic component and tends to run in families, is caused by severe sensitization to multiple food allergens. Doctors put children through rigorous food trials, before finding which are the culprits.

"Dietary restrictions can be quite disabling," said Dr. Marc E. Rothenberg, director of the division of allergy and immunology at Cincinnati clinic. "In fact, our research has shown that these disorders have the lowest quality of life compared with a variety of other chronic diseases of childhood."

Rothenberg, who has been the recipient of research grants from CURED, said scientists are making "great strides" in finding genetic causes and best treatments.

Research at Cincinnati's center made it possible for Jordan Scott, a 9-year-old from Springdale, Ohio, to be on an investigational drug that helped ease his pain. The IV infusion was the only treatment that worked on the boy, but the FDA did not approve the drug.

Today, Jordan is on oral steroids, but they are not nearly as effective. "He's had daily pain since February," said his mother, Melissa Scott, 33.

"The disease is so socially isolating," she said. "When we are happy, we eat, when we are sad, we eat, and when we get together, we eat. I have a child who cannot eat."