{"version":1,"type":"rich","provider_name":"Libsyn","provider_url":"https:\/\/www.libsyn.com","height":90,"width":600,"title":"Community Conversation: EoE and Life Transitions","description":"Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED\u2019s Health Sciences Advisory Council, interview Jessica Grady, a patient advocate living with EoE. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship 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 introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.   [1:13] Holly introduces today\u2019s topic \u2014 eosinophilic esophagitis and life transitions \u2014 and today\u2019s guest, Jessica Grady, a patient advocate living with EoE.   [1:35] Jessica is a mom who was diagnosed with EoE in her 20s, after years of unexplained symptoms: acid reflux, GERD, food impaction, and anxiety around food. For about six years, Jessica searched for answers while dealing with these issues.   [2:00] Since then, Jessica has tried PPIs, steroids, and two clinical trials. She was always interested in the research, so being part of it has been valuable to her. There\u2019s a lot of work involved in clinical trials, and it\u2019s not easy.   [2:29] Jessica is managing her condition and has hit her second endoscopy with remission, with dupilumab. That\u2019s exciting, after her long journey. It has taught her the importance of advocating for yourself and staying hopeful with a chronic condition.   [3:01] After college, Jessica was going out with friends, and had pain almost like ulcers in her stomach. She thought maybe she was going out too much.   [3:20] One day at lunch, water got stuck. Jessica says it was like gargling; it wouldn\u2019t go down. Finally, it went down, and she took a bite of food, and that got stuck. That was her first episode. After that, Jessica has had food impactions as her main symptom.   [3:54] Jessica says it\u2019s quite a reality check when you\u2019re choking on water. How is that even possible? Once that happened, Jessica kicked herself into gear and had an endoscopy.   [4:12] Food impaction is Jessica\u2019s number one symptom. She has been to dinners where it happened, and she calmly excused herself from the table until she could finally get the food to go down.   [4:34] As Jessica aged, her food impactions started getting longer. That was terrifying, especially as a Mom needing to take care of her baby.   [4:52] Holly shares how she had symptoms from infancy and all the way through her childhood, and it was diagnosed as anxiety, until she started working in an EoE clinic and recognized her symptoms. Getting an EoE diagnosis is often very challenging.   [5:40] Jessica went to three different hospitals in her area. She didn\u2019t know what kind of doctor to look for. She went to a GI, got an endoscopy, and woke up with a fat lip. The doctor told her not to have caffeine and start on PPIs.   [6:11] There was no mention of a biopsy or EoE. She was told she had bad acid reflux and ulcers.   [6:35] The PPIs didn\u2019t help. She still had acid reflux and impactions. She was still uncomfortable.   [6:47] Jessica switched to another healthcare system and got closer to the answer, with more endoscopies and testing, but there was no research with it.   [7:02] Finally, Jessica switched to where she is today. There is a doctor and research. They run clinical trials. She gets the latest and greatest updates. She feels like it has helped her get to where she is today.   [7:21] Jessica said the doctor knew what to look for. The moment she described her symptoms, the doctor said it would need to be confirmed with a biopsy, but she has EoE. Jessica asked what now?    [7:34] Ryan says, we hear a lot of difficulty with diagnosis because not all doctors know what to look for. If they see ulcers or other common symptoms that people with EoE have, they can very easily misdiagnose. It\u2019s a tricky diagnosis to make.   [8:03] Jessica says that before her EoE diagnosis, doctors told her she had GERD, acid reflux, ulcers, and anxiety around food. They asked what her food choices were and if she was taking too big bites.   [8:12] Jessica asked the doctors why she always needs to have a bottle of water with her, and why she feels panic if there\u2019s something like a soft pretzel. They told her she was hyperactive and had anxiety. Jessica felt that that was not making sense.   [8:40] That is why Jessica feels it is so important to advocate. There\u2019s a lot of time involved when you\u2019re misdiagnosed. You get your hopes up and have lots of highs and lows. It\u2019s exhausting.   [8:53] Ryan says that when you do get diagnosed, you can start to treat the underlying condition properly, make progress, feel better, and feel like you\u2019re being listened to.   [9:30] Jessica\u2019s current course of treatment is PPIs and dupilumab. She\u2019s learned her food triggers. Being on the biologic means she doesn\u2019t have to worry as much about her triggers, but they can still cause symptoms. She doesn\u2019t eat nuts or pineapple.   [10:16] Jessica used to eat cottage cheese if she had acid reflux, but now she knows dairy is one of the worst things to have. She does her best to be mindful. She\u2019s really thankful that she\u2019s in remission now and can be like everyone else at the dinner table.   [11:04] Holly mentions that there are many trigger foods. It\u2019s patient-dependent. Dairy is the number one trigger, but we all have different little triggers, like pineapple. Holly\u2019s EoE is triggered by any melon. Ryan\u2019s EoE is triggered by apples and rice.   [11:48] Holly avoids all trigger foods for fear of an impaction or throwing up.   [12:27] Jessica says, if she wants to have an ice cream cone and live her life like everyone else, she will, but then she has guilt and wonders if it will do something to her later. She limits the high-allergy foods. If she has ice cream, she won\u2019t have cheese.   [13:06] Jessica monitors her food as much as possible. Her GI tells her that, since she\u2019s in remission, she doesn\u2019t need to be that careful. But she has anxiety because you never know if she will have a problem.   [14:21] Jessica\u2019s GI had told her that she was only allergic to a few nuts and she could try other kinds of nuts. She tried cashews once and had a reaction. She reported it to her GI, and then he told her to avoid all nuts.   [14:47] Jessica recently went to her allergist to be retested for common allergies. The tests came back negative for every allergy. She doesn\u2019t know if that was because of being on the biologic treatment.   [16:01] Jessica\u2019s profession is clinical trial technology. That helped her to understand what a clinical trial is, how to enroll, and patient recruitment. When she went to a hospital with GI research, she asked about it. They had openings, and she enrolled.   [16:33] Jessica was interested in clinical trials because she was desperate for options and answers. Also, the cost of endoscopies adds up. Clinical trials are free. Sometimes you get paid. That was a big win for Jessica.   [17:09] When there was an option for a new treatment, she jumped at it both times. She participated in two trials. She didn\u2019t make it through them.   [17:21] In the first trial, Jessica\u2019s biopsies had two out of three criteria the trial was looking for, although she had active EoE.   [17:33] In the second trial, Jessica had a provision device she used to write a daily diary entry in. She was pretty far in, but then she had tech issues and emailed for help. That\u2019s not part of the protocol. If your diary is not logged correctly, you are out of the trial.   [17:57] That trial was an oral medication. She doesn\u2019t know if she was on the placebo or not. Jessica is always open to trials. She thinks they are very beneficial.   [18:46] After leaving the first trial, when Jessica\u2019s biopsies didn\u2019t meet the criteria, Jessica asked the clinical research nurse to keep her in mind for future trials, so she learned of the second trial.    [19:07] Jessica says she put a lot of time and effort into the second trial, with check-ins and multiple endoscopies, until she was dropped from it. It was challenging and very disappointing when she was dropped from the second trial. She was hopeful.   [19:40] At that point, Jessica changed course and started corticosteroid treatment. The inhaler didn\u2019t work. Then she did the slurry mix, and that didn\u2019t work, and then she did the injections.   [20:09] Ryan notes that Real Talk has talked to many researchers who have run clinical trials. Every time, they say they are so grateful for the community volunteering their time.   [20:21] They\u2019re very aware that some difficulties and challenges come up. Not all patients can make it to the end of the trial, whether that\u2019s on the research side or on the patient side.   [20:34] Ryan says the eosinophilic-associated disorder community, in general, is so willing to volunteer their time and participate in these things, and further research for the overall community. Ryan says it\u2019s good to hear that Jesica tried to participate.   [21:01] Jessica says she thinks it\u2019s valuable. She recommends that anyone who is interested should look into it, especially if you know you have something that\u2019s for the rest of your life. What do you have to lose?   [21:12] Jessica says she has something that can\u2019t be cured, so what is she going to do? She wants to be the tester. She wants to find something to help her. She doesn\u2019t want to choke anymore.   [21:29] Jessica wasn\u2019t a mom when she started in these clinical trials. Now she is a mother of two; she explains what conditions she would require to participate in another trial. She wants the opportunity for telemedicine visits except for when she needs a test.   [23:43] There are a lot of challenges. Jessica says that\u2019s why she is so passionate about patients and getting therapies to them. It\u2019s hard to try to do it all.   [24:24] Jessica was able to get off dupilumab when she was pregnant. She had acid reflux but no other symptoms, choking episodes, or food impactions during her pregnancy.   [25:05] Three months post-partum, it came back with a vengeance. Jessica had her first food impaction that was over 40 minutes. Earlier food impactions had been for seconds or a few minutes. It was terrifying.   [25:27] At three months post-partum, Jessica had to go back on dupilumab. No one could tell her it was safe for her child while breastfeeding. The doctor said it should be digested. It should be OK. \u201cShould\u201d is hard for a post-partum new mother to hear.   [26:08] In Jessica\u2019s second pregnancy, she confidently got off dupilumab again, and everything was great. Exactly three months after the birth of the second baby, she had a 45-minute food impaction.   [26:24] She thought she had to go to the ER. She was at the sink trying to get the food up, while her husband took care of the children. Finally, she recovered from the food impaction.   [27:12] Jessica had some spare dupilumab in the refrigerator from before her pregnancy. She called her GI, said she needed to go back on the dupilumab, and started it that day. On dupilumab, she hasn\u2019t had a food impaction since.   [27:52] Jessica looks at dupilumab as her lifeline. She gets to be like everybody else when she\u2019s on it. She is blessed and thankful for it. It wasn\u2019t approved for EoE until 2022. It has been a long ride to figure out how not to choke.   [29:06] Jessica advises people starting a family to make sure they have a care plan in place. Your doctors, family, and others need to be aware of and understand what\u2019s going on with you.    [29:19] Make sure that you\u2019re communicating. This is especially important for a woman with a GI and an OB. Make sure everyone\u2019s speaking the same language. When it comes to GI and allergy, Jessica wants to ask if they can get together on a call.   [29:41] Prepare safe and easy foods for post-partum. People may be dropping off food. Be mindful of what is safe for you to eat. Ask for a lot of help and try to have your care plan together.   [29:57] Jessica was having calls with her GI doctor when she was planning, once she was pregnant, during pregnancy, and post-partum. There was never a time when she wasn\u2019t doing check-ins to primary care, allergy, and GI.   [30:14] Have a care plan and know your trends. Jessica didn\u2019t realize the post-partum choking episode would repeat after the second birth. She thought it was a one-off. [30:38] If you have an episode, your body is telling you something. Follow the protocol you made for yourself.   [30:47] Once that food impaction happened the second time, Jessica knew exactly what to do because it had happened before. The problem was that she hadn\u2019t been proactive in starting on dupilumab before the food impaction happened.   [31:03] Jessica says her first dilation could only get to 12, so she had to have a second dilation to get to a normal 15.    [31:29] Jessica says she thought she was immortal. It only happened once; she supposed it wouldn\u2019t happen again.   [32:16] Holly says she loves to travel. When she travels, she brings along a medical emergency kit. The quality of life matters.   [32:36] Jessica watches for signs of EoE in her children. They\u2019re not showing signs of it. Anything could happen, and she takes it day by day. If the time comes and it happens, Jessica will know what to do, rather than going in clueless.   [34:44] Ryan says his parents didn\u2019t believe he had EoE before he was diagnosed.   [35:08] Jessica\u2019s last words: I would say the most challenging part of living with EoE is the unpredictability and not knowing, and the lifelong illness with that. You\u2019ve got to be comfortable in the unknown.   [35:23] There\u2019s a lot of innovation and research right now, so I think more answers are coming. Be aware. See what\u2019s going on. Be more in tune with yourself. If you feel like things are happening, be mindful of that. Be comfortable knowing that it\u2019s unpredictable.   [35:50] That\u2019s the most challenging part of having EoE. Always trust your gut. Advocate for yourself. It took me years to get answers, but persistence is what got me there.   [36:05] Ryan says, that\u2019s a great outlook. Keep looking for new answers. Take it one step at a time. Be mindful and on the lookout.   [36:14] Ryan thanks Jessica for joining us today and sharing about your experience and your journey with EoE. I think this will be a super helpful conversation for our listeners.   [36:22] For our listeners who would like to learn more about eosinophilic disorders, please visit apfed.org and check out the links in the show notes.   [36:29] If you\u2019re looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED\u2019s Specialist Finder at APFED.org\/specialist.   [36:37] If you\u2019d like to connect with others impacted by eosinophilic diseases, please join APFED\u2019s online community on the Inspire Network at APFED.org\/connections.    [36:48] Ryan thanks Jessica for joining us today. This was a great conversation. Jessica thanks Ryan and Holly for having her on.   [36:59] Holly thanks Jessica and also thanks APFED\u2019s Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.   Mentioned in This Episode:   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast Apfed.org apfed.org\/specialist apfed.org\/connections apfed.org\/research\/clinical-trials   Education Partners: This episode of APFED\u2019s podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.   Tweetables:   \u201cI\u2019m managing my condition and have hit my second endoscopy with remission, with dupilumab.\u201d \u2014 Jessica Grady   \u201cIt\u2019s quite a reality check when you\u2019re choking on water. How is that even possible? Once that happened, I kicked myself into gear and had an endoscopy.\u201d \u2014 Jessica Grady   \u201cIf I want to have an ice cream cone and live my life like everyone else, I will, but then I have guilt and wonder if it will do something to me later.\u201d \u2014 Jessica Grady   \u201cI advise people starting a family to make sure they have a care plan in place. Your doctors, family, and others need to be aware of and understand what\u2019s going on with you.\u201d \u2014 Jessica Grady   \u201cI would say the most challenging part of living with EoE is the unpredictability and not knowing, and the lifelong illness with that. You\u2019ve got to be comfortable in the unknown.\u201d \u2014 Jessica Grady   \u201cThere\u2019s a lot of innovation and research right now, so I think more answers are coming. Be aware. See what\u2019s going on. Be more in tune with yourself. If you feel like things are happening, be mindful of that. Be comfortable knowing that it\u2019s unpredictable.\u201d \u2014 Jessica Grady   Guest Bio: Jessica Grady, Patient Advocate ","author_name":"Real Talk: Eosinophilic Diseases","author_url":"http:\/\/eosinophil.libsyn.com\/website","html":"