“The scariest part is being afraid of foods,” says 8-year-old Melanie Russell when describing what is difficult about being diagnosed with eosinophilic esophagitis (EoE).
Unfortunately, she’s spent most of her life living under this fear after being diagnosed at 3 years old with EoE, a rare, life-long inflammatory condition of the esophagus related to food.
Fortunately, Melanie and her family found the care and treatment she needs at Cincinnati Children’s, where they travel regularly from their home in Chattanooga, Tenn., to see our team of specialists at the Cincinnati Center for Eosinophilic Disorders (CCED).
It’s a difficult term to pronounce, “eosinophilic esophagitis,” but Melanie has practiced a lot. She began talking about her condition while competing in beauty pageants with EoE awareness being her preferred platform during the interview portion of competitions.
By speaking about her experience, Melanie hopes she can help other kids not feel so scared of food or worried about being different from others. She also hopes to build awareness of EoE and help other kids and families who may be struggling to find the treatment they need.
Melanie, who knows from firsthand experience how scary a hospital visit can be for young kids, recently donated toys to Cincinnati Children’s for other kids to enjoy during their stay.
When she was younger, Melanie was admitted to the hospital many times for various breathing and choking issues. Those were scary times for her and her family — before they knew about EoE or what was wrong with her. She said she chose her gifts in a way that she knew would be meaningful.
“It’s hard to be in the hospital when you’re a kid, and I wanted to bring other kids something to help the time go by faster,” said Melanie.
Since her diagnosis, Melanie’s team of doctors — including Marc E. Rothenberg, MD, PhD, director of the Cincinnati Center for Eosinophilic Disorders — continues to monitor the activity of her disease. In total, she’s had 10 endoscopies and her EoE is currently inactive.
Rothenberg is proud of Melanie’s progress and recognizes the strength within her and all their patients with EoE.
“It’s very inspiring to see patients who still pursue their dreams and do big things, even while having EoE, and managing the diet and all that comes with it. Our patients are very strong,” he said.
Melanie and her family currently work to keep her EoE inactive by avoiding certain foods within her diet, called an elimination diet. She does not consume milk, wheat or nuts. When she was much younger, she was on an elemental diet made up only of formula.
Today, Melanie can enjoy chicken nuggets, steak and hamburgers. At the same time, she is learning how to properly read food labels so she can tell which foods are safe for her, and which ones are not.
“It’s hard when you are at a friend’s house, and they don’t have food that you can have,” she says.
Her mom, Kimberly, elaborates: “One of her closest friends recently invited her for a sleepover. They had always wanted to [have a sleepover] but were afraid that they could not manage the foods that Melanie couldn’t have and so for years avoided the topic of sleepovers.
“It can be really sad, the ways this disease can affect your life. But we can always work through it and come up with other solutions. It’s important to bring it up.”
Good news: Melanie has since been able to bring safe foods to her friend’s house and had fun during sleepovers.
Meanwhile, her dedication to EoE awareness continues. Not only does Melanie share her story through pageants, she also speaks with patient advocacy groups and is working to help raise research funding for a cure to EoE.
“I like that I can use something that I enjoy so much to help others learn about EoE and to one day find a cure,” she said.
(Published September 2021)