For Teen With Eosinophils of the Esophagus, Food Is Forbidden
"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.
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."
Support for Families With EoE
Scott and another Cincinnati area mother, Cathy Reidy, formed a support group to help families deal with the isolation.
"We have moms' nights out and family fun that allows children to meet other kids that get them and don't bat an eye if they see a feeding tube," said Scott.
Reidy, whose 6-year-old Adam has EoE, wants to give other families a "sense of normal."
Her son is able to eat 15 to 17 foods, as long as he takes steroids and supplements his diet with elemental formula. "He's doing very well," said Reidy, 33. "He loves school and plays soccer and has a lot of friends."
Her husband was also diagnosed with EoE at age 33. Food often gets stuck in his throat, and some adults end up in the emergency room with impactions.
Many families struggle with the financial burden of having a child with EoE.
Shay Kyle of Davison, chairman of the Michigan chapter of CURED, has two children with the disease. Chayce, 9, can only eat lemon pudding and has a feeding tube. Keegan, 5, his younger brother is luckier -- at least he can eat two foods, wheat and watermelon.
Chayce used to love sweet potatoes, before he was diagnosed at 14 months. "He had a violent reaction and the poor kid loves them," said Kyle, 35. "The baby curled up in bed in pain, screaming and crying. It's heart-wrenching."
"It was hard to tell a child they can no longer eat in such a food-oriented world," said Kyle. "He just sits and looks and can't be part of it."
The family travels six to eight times a year to Cincinnati for treatment and to be part of their research. "In Michigan, they don't know a whole lot about the disease," she said.
And neither does their insurance company, which "covers some things and not others," said Kyle, who counsels other families by phone.
Kyle had to give up her data-entry job to take care of her son and now her husband has been disabled because of illness. "Life is not easy, by any stretch of the imagination."
Ellyn Kodroff has been the force behind the research that might one day bring better treatments or a cure. She founded CARED after her daughter was diagnosed with EoD at the age of 10.
"The doctor said she would possibly have to have a feeding tube and never eat again," said Kodroff. "My first reaction was, what are we doing about this? There was no cure, no safe treatment and no research money. I said, 'That's not acceptable.'"
Today her daughter Jori is 19 and going to the University of Missouri and is a spokesman for the foundation. CURED raised $2.5 million for scientists around the country -- 100 percent of it goes to research, according to Kodroff.
"We want to spread awareness so people don't suffer so long before getting a diagnosis," said Kodroff . "We don't want them to feel alone."
Jori refused to have a feeding tube and in addition to eight allowable foods, drinks the elemental formula, which all patients admit tastes "revolting."
"She is really determined not to let this disease get to her," said her mother.
But for Sam Pecoraro, it's sometimes a struggle to keep depression at bay.
"I try to be as normal as a can," she said. "But it's not fun and the exams are rough and you feel like an outsider all the time. There's a lot of pain and doctors' appointments -- a lot to go through when you are only 15."
Sam is open with her friends about the disease, but it upsets her that so few Americans, including doctors, know about.
"That's the hardest thing," she said. "Nobody knows what it is and there is no funding and not much research."
Still, her cooking lessons are always rewarding.
"It's my passion," she said. "I can't taste it, but I use my other senses, like how it looks and smells. If I need honey or ginger, I ask my Mom if it's fine."
"I have taken my disadvantages and made them strengths," said Sam. "Of course every girl wants chocolate and things like that. But when I make a meal, I see people enjoying it and it's very fulfilling, and I am still part of the meal."
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