New discovery gives girl some hope

By Ruth Gesmer Silverman
Daily Herald Correspondent
Posted Friday, February 10, 2006

Thanks to a groundbreaking medical finding, life might look a bit brighter for a Buffalo Grove teenager — and other children whose growth is stunted by a disorder that prevents them from getting many of the nutrients from food.

Three years ago Jori Kodroff, now 13, learned that she suffers from eosinophilic esophagitis, or “EE,” one of a number of related diseases in which the body produces abnormally large amounts of white blood cells.

Since then she has had to watch every morsel of food she puts in her mouth; be vigilant over how her food is prepared; and never eat out — in other words, be “different” at a time when she only wants to do what her friends do and eat what they eat.

Now, researchers at Cincinnati Children’s Hospital Medical Center have discovered the first gene associated with EE, a disorder in which the esophagus is overwhelmed with white blood cells.

EE patients have symptoms that mimic acid reflux disease, food allergies and inflammatory bowel disease.

For children like Jori, the disease results in slowed growth, because their bodies cannot absorb needed nutrients. They have chest and abdominal pain, difficulty swallowing, heartburn and vomiting.

The study, which is featured on the cover of the Feb. 1 issue of the Journal of Clinical Investigation, explains the critical role of the gene, eotaxin-3.

Dr. Marc E. Rothenberg, Jori’s primary doctor, is the corresponding author of the study. He directs the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children’s Hospital Medical Center.

Rothenberg said the finding is a major step toward more effective treatments, and, perhaps, a cure. He and colleagues have shown that EE affects as many as one in 2,000 children.

Discovery of the new gene will not cure Jori. But it will aid others by helping doctors make a proper diagnosis earlier in the course of the disease — and get them into the right treatment plan, faster.

Many patients — both children and adults, diagnosed with other disorders probably have EE, Rothenberg said, but few in medicine have any familiarity with it.

Jori has lots of friends, all at least a foot taller than she is. She is 4 feet, 5 inches and wears a child’s size 8. Her shoes are size 2.

The kids go out to restaurants, but Jori joins her friends only after she grabs her dinner at home.

Her mother, Ellyn, said the family doesn’t take vacations and they don’t bring in Chinese food.

“That was her favorite,” Ellyn says wistfully.

“She can eat steak, carefully washed fruits and veggies, potatoes, and a few other things — no wheat, no cookies — almost everything is on the ‘no’ list, or she will become very ill.

“When she goes to a friend’s house, their moms know they must wash knives and plates, because even a small crumb of the wrong food can trigger a violent reaction.”

Through it all, Jori has tried to maintain her personal interests. She has had a bat mitzvah, with a carefully planned menu for her party. She loves being on the pom squad at Twin Groves Middle School.

“She’ll go to practice doubled over in pain, if she has a flare-up,” Ellyn adds.

Ellyn and Fred Kodroff started CURED (Campaign Urging Research for Eosinophilic Diseases), a not-for-profit foundation that has raised more than $200,000 to help fund Rothenberg’s research. Rothenberg is grateful. “It’s a complex, sophisticated paper and funding has all but disappeared for research into new diseases,” he said.

The Kodroffs are planning the group’s third annual bowling event on March 19, at EsKape, in Buffalo Grove. In the past two years, they have brought in more than $80,000 at each event. For details, visit www.curedfoundation.org