Before heading out in his hometown of Atlanta, Ryan Piansky starts his day with a breakfast of essential nutrients – delivered as a liquid formula that he pours through a feeding tube connected directly to his stomach.
“lt’s a whole lot quicker to do the elemental formula than to eat anything,” the 16-year-old says.
Ryan has eosinophilic esophagitis, better known as EoE, a form of allergy that causes the esophagus to swell when certain foods are consumed. For Ryan, this condition means that his diet is restricted to chicken, corn, cheese, some grains, and a few fruits and vegetables. Plus, eating can be a lengthy process. Ryan estimates that it takes him 30 minutes to eat lunch, even though his meal consists of only eight crackers.
When Ryan was a baby, his mother, Dr. Wendy Book, knew early on that something was wrong. At four months old, her son’s weight dropped and his growth slowed, and by the age of 1, Ryan was admitted to hospital with failure to thrive. What doctors initially thought might be reflux or even lactose intolerance, turned out to be EoE, a diagnosis he formally received when he was 2 ½ years old.
While a restricted diet and medication keep him healthy, it’s his positive attitude that has helped Ryan the most. “He’s got a great temperament to deal with this disease: he’s a planner, he can think ahead, and he’s very good at taking care of himself” says Book.
Whenever the teen heads out for high school field trips, he brings food essentials, such as sunflower butter, lentil crackers and water, because he knows that the food and drink provided is likely unsafe for him.
When Ryan goes out for meals with his friends, he either checks if there are menu items he can eat, like corn chips, or simply brings his own snacks. “Really, if I’m going out with friends, it’s more of a social experience,” he says. “So not being able to eat doesn’t take away from that.”
Since his diagnosis, Ryan and his parents, who are both physicians, have gotten involved in the EoE community bringing the need for more EoE awareness and research to the attention of Congress. When he was just 7 years old, Ryan even spoke to then-Speaker of the House Nancy Pelosi about the need for a National Eosinophil Awareness Week, which is now held every year in the third week of May.
After graduation, Ryan hopes to study engineering, possibly at MIT, and says EoE won’t hold him back. “It does not stop me from doing anything I want to do,” he says.