Jack Weiss, 11, of Suffern has EOE, a severe food allergy that affects the esophogus. He has started a facebook page as a support group and to raise awareness. (Video by Peter Carr/The Journal News)
Eosinophilic esophagitis (EoE) is a chronic allergic inflammatory disease of the esophagus. Cases have risen dramatically in the past 20 years, say doctors, and there remains no cure for the disease.
Most people have never heard of the disease that runs Jack Weiss’ life.
But eosinophilic esophagitis (EoE) is on the rise, say doctors — and many children and adults have no idea they’ve got it. Left untreated, the condition can lead to narrowing of the esophagus and severe difficulties swallowing. Treatment options vary, but there exists no cure.
“Everybody knows about Lyme disease and celiac disease, but they’re totally blindsided when you bring this up,” says Dr. Howard Bostwick, a pediatric gastroenterologist with Children’s and Women’s Physicians of Westchester. “It’s become probably one of the major diagnoses we make.”
Symptoms of EoE can include throat pain, abdominal pain, vomiting and trouble swallowing, according to the Cincinnati Center for Eosinophilic Disorders, one of the nation’s few research centers devoted exclusively to the condition. Young children with the disease may have slow or poor growth. Adolescents who are undiagnosed may suddenly have food impacted in the esophagus.
Regurgitation and reflux-like symptoms are also common in children, says Bostwick.
Jack, who lives in Suffern, found out he had EoE three years ago, when he was 8, after he started getting stomach aches and throat pain at summer camp. “I was thinking it was in my head, but my allergist and the GI doctor said to take an endoscopy, and that’s how they diagnosed me,” he says.
The condition, a chronic allergic inflammatory disease of the esophagus, is caused by an overgrowth of white blood cells called eosinophils. Most who are diagnosed with EoE must dramatically alter their eating habits or risk causing permanent damage.
“You take a 14-year-old boy who’s eating, and all of sudden the food sticks and he becomes completely unable to swallow it,” says Bostwick. “Overwhelmingly, when this happens to a child of this age and we investigate it, they turn out to have eosinophilic esophagitis.”
While Jack’s family was aware of his peanut allergy, finding out he also had EoE opened up a dark new world. “I was hopeful the diagnosis could put us on the road to recovery, so he would feel better,” says Alyssa Weiss, Jack’s mother. “But I was devastated to find out this may be a lifelong battle for him.”
Alyssa began researching treatment options for Jack, and learned the choices were limited. Children with EoE are sometimes put on feeding tubes. Others need to drink an elemental amino acid formula that tastes so terrible, many can’t get it down. Some are treated with steroids.
Ellyn Kodroff, the president of CURED (Campaign Urging Research for Eosinophilic Diseases), first learned about EoE when her daughter, Jori, was diagnosed in 2003 at the age of 11. At the time, doctors told the family that 1 in 10,000 had the conditon. Now it’s up to 1 in 1,000, she says.
Bostwick says the reason for the rise in cases of EoE remains unclear. But the toll it takes on patients and families is profound, says Kodroff.
At 14, Jori had to go on formula and stop eating all food. Now, at 22, she is able to eat only six things: apples, pears, bananas, shrimp, broccoli, potatoes and lettuce. She has been on steroids for 10 years.
Alyssa didn’t want Jack to go the steroid route. So, with the help of an allergist and a gastroenterologist, he started an elimination diet that omitted foods believed to provoke an allergic reaction. Since his diagnosis, he’s had an endoscopy every two to three months and is responding well to his current diet, which allows for about 20 foods, including corn, bananas, raspberries, chicken and rice.
The severe food restrictions means Jack can’t go to restaurants. Birthday parties are difficult. And family trips require extensive planning.
But Jack considers himself lucky. He’s feeling better, he’s not on steroids, he’s doing well in school and he’s kicked off a fundraising campaign through his own Facebook page, Allergy Island, aimed at raising awareness of EoE.
So far, he’s gotten more than 1,000 likes — and his original dance, the Allergy Island shuffle, is finding people jumping around on camera in hopes of helping Jack spread the word. He’d like to see the dance go viral, the way the ice-bucket challenge put the spotlight on ALS.
“If I’m able to raise awareness and donations, bring us closer to a cure or make even a 1 percent difference, then I couldn’t ask for more,” he says.
Kodroff, whose foundation is the primary source of funding for EoE research, says Jack’s attitude is extraordinary. But for this 11-year-old, it’s just a matter of looking on the bright side.
“Everything happens for a reason,” he says. “If I could make one person feel less alone in this, one school more conscious of how they treat students with allergies, or help one person get answers, then I’ll be happy.”