Community Perspective: Eosinophilic Esophagitis

Real Talk: Eosinophilic Diseases

Description:

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE, who serves on APFED’s Health Sciences Advisory Council, talk with Declan, a teenager living with eosinophilic esophagitis. In this episode, Ryan and Holly interview Declan about his EoE diagnosis, his dietary restrictions, how he receives support from his parents and friends, and upcoming milestones such as transitioning clinical care to an adult provider and attending college.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Co-host Ryan Piansky welcomes co-host Holly Knotowicz. Holly introduces the guest, Declan, a teenager living with eosinophilic esophagitis (EoE). Declan is 16 years old and has been living with EoE since 2019.

[1:38] Declan likes to hang out with friends, play video games, and play the cello. Declan has been living with EoE for about four years. In the beginning, his EoE was hard to handle, in part because it was new to him.

[2:03] Eliminating milk because of his EoE was hard for Declan. Once he started the milk-free diet, he got his eosinophils to zero in his second endoscopy.

[2:24] Before Declan was diagnosed, his weight was low, he was having trouble swallowing, both of which are signs of EoE. He was at risk of having a feeding tube when he was diagnosed, but is now able to manage his EoE with diet therapy. He feels much better now. His mom helped him find substitutes for things that he can’t eat. He enjoys the substitutes.

[3:03] In 2018, Declan lost a lot of weight, had trouble swallowing, and felt like food was stuck in his throat. Losing weight didn’t worry him at first. When he started getting the feeling of food getting stuck in his throat, he became concerned and sought help.

[3:39] Ryan was diagnosed when he was two, so he doesn’t remember much of it but his parents told him about it later.

[4:10] Holly had symptoms her whole life but they were not recognized as EoE for many years. She put ketchup on all her food and drank a lot of milk to be able to swallow. Holly was diagnosed in her 20s at which point she needed an esophageal dilation.

[4:49] Declan was about 12 when he was diagnosed after a period of weight loss and then swallowing issues.

[5:12] Declan can’t have milk so his friends thought he was lactose-intolerant. He had to explain EoE to them. They eventually understood.

[5:58] Declan has to read labels for the ingredients. If something has casein or whey, he cannot eat it. Eating at restaurants is challenging if they don’t have an allergen menu. He often researches foods online. Declan’s Mom helps him a lot through this journey.

[7:20] Declan’s last bad reaction happened shortly after he was diagnosed. He was on a cruise ship with his family. There was so much food with milk on the ship and he decided to have some. After the cruise, he felt terrible, had difficulty swallowing, and food once again got stuck in his throat. Ever since then, he has remained milk free, except if he consumes it by accident.

[8:08] If Declan accidentally has milk, he takes a steroid that opens his esophagus a little more and takes away the temporary inflammation.

[8:33] Even as an adult, it is still hard for Holly to resist the cheesecake or the pizza with real cheese. She also can’t have milk due to her EoE.

[9:15] Declan and his mom recently baked milk free chocolate cookies using vegan butter and almond milk. Declan’s mom has substitutes that she uses in all recipes. One of Declan’s favorites is a homemade dairy-free pizza.

[9:52] Since Holly was diagnosed, many new dairy alternatives and substitutes have come onto the market. There are many brands of cheese and milk alternatives.

[11:16] Declan takes a pill every night that helps with his acid reflux.

[11:42] Ryan describes his journey in the transition of care process from pediatric patient to adult patient. He started by learning the medicines and dosages he was on and having a say in what foods he was eating and what foods he was avoiding.

[12:15] At the beginning of Declan’s care, his mom did everything. She made the appointments and spoke to the doctor for Declan. Now Declan is preparing for his transition of care. He is more aware of what he can and can’t eat. He speaks for himself, describing his symptoms and what’s going on.

[13:18] School lunches can be difficult for Declan. His mother researched the ingredients of all the foods served at his school. When going to social events, he brings something for himself to eat or just doesn’t eat.

[14:35] Declan explains to his new friends what EoE is and why he has to avoid milk. He explains that it doesn’t give him anaphylaxis but does irritate his esophagus. Holly tells her new friends the same kinds of things and that she wants to keep her esophagus healthy.

[16:03] If you are a friend of a person living with EoE, you can help by supporting them and being there for them if they need help. Make sure that you and your other friends are aware of what your friend can and cannot eat, especially when visiting their homes, so they can eat with you and other friends.

[17:01] Holly shares a story about being very impressed when a friend of hers called ahead to a restaurant to make sure their menu included dairy-free, gluten-free, and soy-free foods she can eat.

[17:30] Ryan shares an experience from over the summer going out to eat with friends of his. They remembered his triggers and called ahead to make sure there were safe options for him at a restaurant.

[18:20] Declan plans to go to college and his first choice of major is architecture, or maybe chemistry or another science. When in college, Holly was unable to eat the cafeteria food.

[19:33] Ryan had a similar experience. After talking with Disability Services and Food Services, it was determined that he needed an apartment with a kitchen to cook for himself. He shared the apartment with three roommates.

[20:44] When selecting a college, Declan plans to check in with the cafeteria and see if they have anything he can eat. On a recent college visit, he found a lot of places with dairy-free options that he could eat.

[21:27] When Holly was in college, her cooking space included only a microwave and a hot plate. She took a position as a nanny, to have access to a kitchen. Today, the world is becoming more aware of dietary restrictions and making better accommodations.

[22:40] If Declan’s family takes a trip, they always research the area where they will be staying to find places where he can eat. If they are traveling far, it becomes harder to research what is available at that location.

[23:20] Ryan tells how he prepared for a semester abroad in France.

[24:05] Declan’s biggest challenge of living with EoE is making sure he has a place to eat if he’s away from home or on vacation. He always has to research a restaurant to know if they have anything he can eat there.

[24:39] Holly always carries a bag with safe snacks like protein bars, and medicines, in case she can’t find safe options at a restaurant or a store with foods she can eat.

[25:37] Holly and Ryan thank Declan for sharing his experiences to help others.

[25:46] Declan’s closing thought: “You shouldn’t let EoE define you. Know that there are a lot of people that are there to support you; your friends, your family, and even different communities like this one, that can help give you knowledge and support you. Also, you should definitely be open to trying new things.”

[26:54] To learn more about eosinophilic esophagitis, visit apfed.org/eoe, to access the Specialist Finder, visit apfed.org/specialists. Ryan and Holly thank Declan again for a great conversation and thank APFED’s education partners, linked below, for supporting this episode.

Mentioned in This Episode:

American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, Sanofi, and Regeneron.

Tweetables:

“I just like to do the normal stuff that kids my age do, whether that’s hanging out with friends or playing video games; I also play the cello. I’ve been living with EoE for about four years, now.” — Declan

“Once I started the dairy-free diet, I eventually got my eosinophils to zero when I had my second scope, which was really good.” — Declan

“Research is the key. … If we’re going to go to a different state, we always research to see in the area where we’re staying, what places I can and can’t eat.” — Declan

“It’s a really interesting experience. My journey has a lot of highs and lows, but in the end, I got to experience so much.” — Declan

About Declan:

Declan is 16 years old and has been living with EoE since 2019. He is in 11th grade and has been playing the cello since 4th grade. He is a huge fan of classic movies, and his favorite classic movie of all time is “Jaws”. He has a passion for architecture and science and loves to play video games and hang out with his friends.