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's 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's topic — eosinophilic esophagitis and life transitions — and today's 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's a lot of work involved in clinical trials, and it's not easy.

[2:29] Jessica is managing her condition and has hit her second endoscopy with remission, with dupilumab. That's 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't 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's quite a reality check when you're 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's 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't 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't 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's 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's 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's a lot of time involved when you're misdiagnosed. You get your hopes up and have lots of highs and lows. It's 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're being listened to.

[9:30] Jessica's current course of treatment is PPIs and dupilumab. She's learned her food triggers. Being on the biologic means she doesn't have to worry as much about her triggers, but they can still cause symptoms. She doesn't 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's really thankful that she's in remission now and can be like everyone else at the dinner table.

[11:04] Holly mentions that there are many trigger foods. It's patient-dependent. Dairy is the number one trigger, but we all have different little triggers, like pineapple. Holly's EoE is triggered by any melon. Ryan's 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't have cheese.

[13:06] Jessica monitors her food as much as possible. Her GI tells her that, since she's in remission, she doesn't need to be that careful. But she has anxiety because you never know if she will have a problem.

[14:21] Jessica's 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't know if that was because of being on the biologic treatment.

[16:01] Jessica's 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't make it through them.

[17:21] In the first trial, Jessica's 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's 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't 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's biopsies didn't 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't work. Then she did the slurry mix, and that didn't 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're very aware that some difficulties and challenges come up. Not all patients can make it to the end of the trial, whether that's 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's good to hear that Jesica tried to participate.

[21:01] Jessica says she thinks it's valuable. She recommends that anyone who is interested should look into it, especially if you know you have something that's for the rest of your life. What do you have to lose?

[21:12] Jessica says she has something that can't 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't want to choke anymore.

[21:29] Jessica wasn't 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's why she is so passionate about patients and getting therapies to them. It's 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. "Should" is hard for a post-partum new mother to hear.

[26:08] In Jessica's 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't had a food impaction since.

[27:52] Jessica looks at dupilumab as her lifeline. She gets to be like everybody else when she's on it. She is blessed and thankful for it. It wasn't 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's going on with you.

[29:19] Make sure that you're communicating. This is especially important for a woman with a GI and an OB. Make sure everyone's 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't doing check-ins to primary care, allergy, and GI.

[30:14] Have a care plan and know your trends. Jessica didn't 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't 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't 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're 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't believe he had EoE before he was diagnosed.

[35:08] Jessica's 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've got to be comfortable in the unknown.

[35:23] There's a lot of innovation and research right now, so I think more answers are coming. Be aware. See what's going on. Be more in tune with yourself. If you feel like things are happening, be mindful of that. Be comfortable knowing that it's unpredictable.

[35:50] That's 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's 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're looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder at APFED.org/specialist.

[36:37] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's 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's 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's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"I'm managing my condition and have hit my second endoscopy with remission, with dupilumab." — Jessica Grady

"It's quite a reality check when you're choking on water. How is that even possible? Once that happened, I kicked myself into gear and had an endoscopy." — Jessica Grady

"If 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." — Jessica Grady

"I 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's going on with you." — Jessica Grady

"I would say the most challenging part of living with EoE is the unpredictability and not knowing, and the lifelong illness with that. You've got to be comfortable in the unknown." — Jessica Grady

"There's a lot of innovation and research right now, so I think more answers are coming. Be aware. See what's going on. Be more in tune with yourself. If you feel like things are happening, be mindful of that. Be comfortable knowing that it's unpredictable." — Jessica Grady

Guest Bio:

Jessica Grady, Patient Advocate