The EoE Patients Perspective & Stella's 50 yrs to diagnosis - by EOS Network Chair Amanda Cordell

This presentation was given at the 2020 EUREOS symposium to healthcare professionals around the globe an opportunity to share the adult patient experience survey from June 2020 and an insight into "Stella's story" a patient who took 50 years to be diagnosed with Eosinophilic Oesophagitis. A true picture of how EoE can affect someone's quality of life and the need for disease awareness and better standards of care to reduce diagnosis delay. EOS Network Charity continues to ensure the patient's voice is heard to improve the lives of those affected.

[@ainsleighbrandler414]

Thank you so much for this. It's so nice to have a community that understands this hideous disease x I appreciate your work very much

[@eosnetwork7789]

Thank you for your kind words of recognition 💜 we will continue to confront eosinophilic diseases together.

[@jayelbee777]

I’m 57 and just got diagnosed with EOE after 4 years of searching for results. Seems like doctors want to blame so much on GERD and just prescribe meds for that. So frustrating to go to so many doctors and not get answers. How can doctors learn about new diseases?
I’m on a very restrictive diet because I don’t want to take medicines that then in turn cause other problems. Having my esophagus stretched really helped along with not eating foods that aggravate it. I still don’t know what I’m allergic to. I’ve lost 15 pounds in the last 2 1/2 months, but I feel a lot better. Eating good food, and not eating the top 6 triggers. No gluten, dairy, eggs, fish, soy, grains, nuts or sugar. It’s difficult but I’m learning how to survive without. I hope my allergy test shows something so I can reintroduce some foods. It takes so long to get appointments.

[@eosnetwork7789]

Hi Jan, glad you have found us. Sorry to hear you had such a difficult time with getting diagnosed but as you saw from the video sadly this is not uncommon. It would be great if you registered with our patient and carer community hub then we can keep you up to date with the latest info and events. 16th - 22nd May is National Eosinophilic Awareness Week and we will be rolling out a series of webinar recordings on EoE including diets and management. You can register with us via this link www.eosnetwork.org/register-with-us