Jori Learns to Live with Eosinophilic Esophagitis
Jori, 16, has eosinophilic gastrointestinal disorder (EGID), a disease that triggers a severe allergic response to food, causing pain, vomiting and a host of other debilitating symptoms.
At age 10, Jori was not growing like she should. A series of tests in her hometown of Chicago revealed that her hemoglobin and red blood cell counts were very low, that of a malnourished child.
“Jori never had great eating habits,” says Ellyn Kodroff, Jori’s mother. “She had occasional nausea and vomiting, but no major symptoms that we were aware of.”
Tests run by Jori’s pediatrician revealed that she had eosinophilic disease, identified by the presence of an increased number of eosinophils, a white blood cell, in her stomach and intestines.
Jori’s pediatrician estimated that she’d had the disease for about three years and that her stomach was severely inflamed and bleeding.
“The doctor said she was in pain – pain that would cause most people to double over in agony. Since she’d been living with it for so long, she probably thought everyone felt this way,” Ellyn said.
In Search of Help
After Jori’s diagnosis, Ellyn went in search of information to learn about Jori’s condition and find her daughter the best possible care.
“Most of the doctors we called knew little or nothing about eosinophilic disorder,” Ellyn recalls.
Then she found Cincinnati Children’s.
“When I found Cincinnati Children’s, I learned that there wasn’t just a clinic, but a whole team of specialists dedicated to care and research in eosinophilic disorders,” Ellyn says.
Within three months, Jori made her first visit to Cincinnati Children’s. She was tested for allergies to 70 foods and was allergic to 40 of them.
For the next three years, Jori tried several treatment options, including two different medications and steroids. There were some promising results, but nothing worked long-term. And she wasn’t getting the nutrition she needed to grow and thrive.
As a freshman in high school, Jori was only 4’6” and 70 pounds and looked much younger than her 14 years.
“When you look 10 years old, people treat you like you’re 10,” Ellyn says. “Emotionally it was very difficult for her.”
In October 2006, Jori’s doctors recommended she abstain from all solid food and begin a diet of only elemental formula, a pure form of protein, free of allergens and loaded with essential vitamins and nutrients.
“We were all devastated, and Jori didn’t want to do it. We talked about it, agonized over it, really, and in the end realized it was her only option,” Ellyn recalls.
And so began Jori’s life without eating.
A Foundation is Born
Ellyn and Jori’s father, Fred Kodroff, refused to accept that their child would have to live her entire life simply managing her symptoms. They decided to fight for a cure.
“Watching Jori’s life change, and meeting so many others suffering with this disease, made us determined to do something to help,” Ellyn says.
In 2003, Ellyn and Fred, along with family and friends, established CURED (Campaign Urging Research for Eosinophilic Disease) to fund research, raise awareness and educate and connect patients and families from around the world.
CURED supports the research efforts of Marc Rothenberg, MD, PhD, director of the Division of Allergy and Clinical Immunology and the Cincinnati Center for Eosinophilic Disorders (CCED) at Cincinnati Children’s. To date, CURED has given more than $1 million to Dr. Rothenberg’s research program.
“Dr. Rothenberg has studied every aspect of this disease,” Ellyn says, “and he has built a team of researchers who share his passion and determination to find the causes and a cure.
“Cincinnati Children’s is clearly the leader in treating patients with eosinophilic disease and educating other doctors.
That’s why we took Jori there, why we continue to travel to Cincinnati for her care and why we fund Dr. Rothenberg’s work,” Ellyn says.
Funds from CURED provide key financial support for innovative research into the genetic triggers of these disorders and better treatments.
“We will continue to raise money and donate it to Dr. Rothenberg’s research. We’re not going to stop raising money until we find a cure,” Ellyn says.
Today, Jori is a confident 16-year-old who doesn’t let her condition stop her from doing the things she loves, like dancing, hanging out with friends and attending holiday celebrations.
“Everything involves food. If you don’t participate, you miss out on just about everything in one way or another,” Jori says. “It isn’t fair, but I’d rather the situation be unfair than to not be included at all.”
Jori can now eat pears, bananas and sweet potatoes, along with the protein formula. She visits Cincinnati Children’s every three months to see Phil Putnam, MD, the medical director of the CCED, for an endoscopy to check her eosinophil levels.
“Jori understands that this is part of her life and she’s just hoping for a cure, like we are,” Ellyn says. “We get through each day with hope because we know Dr. Rothenberg won’t rest until she is cured.”