An urgent admission to the emergency room for 17-year-old Justin Steinberg (now 22 years old) led to an unexpected diagnosis of eosinophilic esophagitis (EoE). Adjusting to life with EoE has brought challenges but Justin, who now lives “symptom-free”, is proof that EoE need not be a life-defining, devastating diagnosis. Good quality coordinated care can bring EoE under control and help manage it successfully.
Justin’s journey with EoE
Justin’s diagnosis with EoE happened suddenly in his senior year of high school. He had been unaware of any symptoms while he was growing up but looking back he realizes that the signs were there. People said he was “a slow eater” and occasionally he had a “burning sensation” in his chest. “I never gave it much thought. I just accepted it as my normal.”
Without realizing it, Justin’s EoE was gradually getting worse. Eventually this caused his esophagus to constrict, resulting in an urgent and frightening admission to the hospital.
Justin had been at home enjoying Chinese food when some rice got stuck in his throat. It felt strange and severely uncomfortable. Despite his frantic efforts he was unable to clear it. He was terrified.
“You think that rice is so small it should be easy to go down, but I couldn’t swallow or spit it up. I felt like I couldn’t breathe—it was very frightening.”
In the hospital, Justin underwent many tests and procedures, including a dye test, which involved swallowing a dye to visualize his swallowing pattern. Justin and his parents waited anxiously overnight for results before an endoscopy the next day. Justin’s throat was so constricted that the endoscopy had to be performed using a tube size typically reserved for infants. His throat was dilated with a balloon to allow the doctors to take a biopsy and check his white blood cell count. The procedure was incredibly sudden and dramatic.
The initial challenges and management of EoE
Following the diagnosis, Justin realized he would need to make drastic changes to his lifestyle. As a typical teenager, he had previously eaten whatever he wanted, and the elimination of major food groups was particularly challenging.
Initially he had to eliminate gluten, corn, soy, and dairy. Justin has slowly been able to reintroduce some of these foods. However, gluten remains a problem for him which he has now removed completely from his diet.
At first Justin was anxious about eating out with friends, but over time he has “gotten used to it” and with the increase in gluten-free dining options this has become easier. However, traveling remains a source of anxiety for him because language barriers make communicating allergies more difficult.
The emotional impact of EoE
The mental health implications of living with EoE have in some ways been a bigger issue for Justin than managing the physical aspects of the condition.
Justin found that episodes of being unable to clear his throat had impacted his confidence when eating and swallowing. Over time he discovered eating strategies to overcome his anxieties. This involves cutting his food into very small bite-sized pieces and chewing excessively to ensure that they can go down easily. Sometimes it takes him two hours to eat a meal.
Something else which Justin finds frustrating is having to explain his condition and why he cannot eat certain foods to new people. “They assume I have celiac disease, and it gets tiresome having to explain.”
Justin's trusted support network helped him regain his confidence in eating and managing the anxiety that surrounds it. This vital support from his parents and others has alleviated much of the daily worry surrounding his condition. Justin also finds great comfort in speaking with his specialist team.
Justin has now reached a positive place with his condition through diet management and medication with an annual check-up with his team. Thanks to that winning combination Justin now lives “more or less symptom-free.”
Justin’s mom and dad have become advocates for EoE and have launched a fundraising charity called Charit-EoE Concert for a Cure for Eosino… what???. Their organization has held fundraising events for APFED’s (American Partnership for Eosinophilic Disorders) HOPE on the Horizon Research Fund with the aim of helping to find and fund cures for EoE.
Justin feels grateful to have his EoE under control and his hope is for others who live with EoE to receive the same level of support as him. His advice to anyone with a new EoE diagnosis is to be adaptable and flexible.
“It’s a huge change in your life. Know your routine and habits with your food and be open to change.”
Justin is a young man at the start of an exciting new career and he is determined to live his life to the fullest. He does not want to be known for or defined by his disease, but he does want to raise awareness. By doing so he hopes to create more knowledge and understanding, and a better future for people living with EoE.