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Real Talk: Eosinophilic Diseases


Mar 29, 2024

Description:

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Jacqueline Gaulin, the Founder of Gastro Girl, a source of information for people living with various gastrointestinal disorders.

In this episode, Ryan and Holly interview Jacqueline Gaulin about her career, how she started Gastro Girl, its podcast, and the partnership between Gastro Girl, the American College of Gastroenterology, and GI on Demand.

 

Listen in for more information about this empowering resource for GI patients and their families.

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:

[:51] Ryan Piansky and co-host Holly Knotowicz welcome Jacqueline Gaulin, Founder of Gastro Girl, a patient-centered company that focuses on empowering individuals living with digestive health conditions through evidence-based information, resources, and access to GI experts to help people make informed healthcare decisions.

 

[1:42] Holly thanks Jqcqueline for having APFED’s Executive Director, Mary Jo Strobel, as a guest on the Gastro Girl Podcast last fall. There is a link in the show notes.

 

[2:07] Jacqueline started Gastro Girl as a blog, in 2007/2008 while working for a startup, trying to do great things for healthcare. She was charged with the Digestive Health channel. They needed content on living with disease and empowering patients. She created a persona, Gastro Girl, and started a blog around her.

 

[2:41] Gastro Girl became a popular part of the site. The company was bought but Jacqueline retained the URL, Gastro Girl, and the persona. She engaged on Twitter and then got a job at the American College of Gastroenterology (ACG) where she dug into GI and learned the pain points from both the provider and patient sides.

 

[3:09] Jacqueline saw that patients didn’t have the resources, access, and champions they needed so she created a company out of Gastro Girl to meet their needs. In 2019, Gastro Girl partnered with ACG to create a provider-focused platform, GI On Demand, that provides ACG members and their patients access to multi-disciplinary GI expertise.

 

[4:02] Ryan tells about his experiences with APFED as a person living with Eosinophilic Esophagitis and Eosinophilic Asthma. His family is passionate about the patient experience for people with eosinophilic disorders. Ryan sees that Jacqueline is also passionate about empowering patients.

 

[4:39] Jacqueline loves that patients and their loved ones are involved in advocacy. There is no better voice than those who walk on that health path. Jacqueline, as a child, saw her grandmother needing laxatives to feel better. Jacqueline didn’t understand. Then Jacqueline got a dog with digestive problems that needed veterinary help.

 

[5:51] Jacqueline was fascinated by the whole connection between the digestive system and our overall health. When she started Gastro Girl she was going through a lot of trauma and lost a lot of weight. She was diagnosed with irritable bowel syndrome (IBS).

 

[6:48] Gastro Girl brings together resources and information that run the gamut of digestive-health-related topics. It has resources and partners, like APFED, that cover all the areas of GI and bring the pieces together to help patients find the information they need, when and how they need it.

 

[7:21] Holly tells how she searched symptoms online, was able to find Gastro Girl, and did a deep dive to navigate many areas. Holly also tells how she saw herself in patients’ symptoms while she was helping in an EoE clinic before she was diagnosed with it.

 

[8:38] Gastro Girl has baseline content on what eosinophilic gastrointestinal disorders are and how they are diagnosed. Then it points to expert partners like APFED to speak to eosinophilic disorder topics and support in-depth. Gastro Girl focuses on symptoms and identifying diseases earlier to get into care quicker.


[9:25] The Gastro Girl podcast and YouTube channel have episodes on EoE. The comments that come in on the videos, like “EOE 101,” Jacqueline says are mind blowing. People say the videos help them identify what possibly could be going on and get them to seek care without alarming them.

 

[10:34] Gastro Girl offers evidence-based information and resources so that people know they can come to the site and find sites like APFED and the ACG that are trusted and credible, that will not send them down a rabbit hole and confuse them.

 

[12:07] A colleague of Jacqueline’s friend emailed Jacqueline with her young son’s symptoms. Jacqueline isn’t a doctor and can’t diagnose but the symptoms sounded like EoE. She recommended that the mother ask her son’s doctor if he could be tested. Two months later she heard he had eosinophilic asthma and EoE.

 

[13:21] Jacqueline says the biggest message we could get out there is for patients to pay attention to credible resources. She cautions patients to be mindful and use discretion when going to the sites for their health information. Dr. Google is not great. Holly directs patients toward specific videos or episodes that offer the best information.

 

[14:41] There are some times when Jacqueline does not approve a comment to a podcast or video if she is concerned the comment will do more damage than good. She urges listeners and viewers to exercise caution on what comments they listen to.

 

[16:22] Jacqueline has interviewed many patients, caregivers, and providers in the GI space. She says patients want to be heard and feel that they are being listened to and that they’re getting access to the right information so they can feel better. That can mean different things to different patients in their quality of life.

 

[17:47] Gastro Girl is about putting the patient at the center. Being patient-centric is seeing the patient’s view first. Gastro Girl supports patients having collaborative care and shared decision-making, giving information so they are more educated and informed as they ask questions and collaborate on decisions with their providers.

 

[19:25] Thinking critically and asking the right questions makes you an active participant in your healthcare journey, and hopefully, gets you to a better result.

 

[20:26] Jacqueline learns every day from her podcast guests. She has learned that healthcare providers, gastroenterologists, dieticians, and psychologists care about their patients. They want patients to get better. Their passion and caring are overwhelming.

 

[21:20] Jacqueline has learned that patients are resilient and committed, not only to finding better ways to have a better quality of life but also to advocacy efforts, helping, and lifting their fellow patients. Jacqueline says together we are much stronger than to be isolated by ourselves, dealing with big healthcare issues.

 

[22:55] Many doctors are involved in research, speaking, webinars, and educating fellow providers and patients. It’s mind blowing to Jacqueline!

 

[23:16] Running Gastro Girl and GI on Demand during COVID-19 was hard and stressful for Jacqueline. She was inactive and gained weight. She worried about taking care of others, but not herself. She is back on track, exercising and losing weight.

 

[26:08] Jacqueline says we have to be kind to ourselves; we have to have compassion and grace towards ourselves. We’re very kind and compassionate to others and give them grace. Make sure you extend grace to yourself.

 

[26:27] Jacqueline cites Tara Cousineau, author of The Kindness Cure. Positive reinforcement is better than beating yourself up. When you feel good, you’re going to do the good things next time.

 

[27:46] Jacqueline tells about GI on Demand. It’s provider-focused with multiple disciplines available for healthcare providers. Providers and patients can search for dieticians, GI psychologists, and genetic testing and counseling. This helps GI providers and their practices to help their patients better.

 

[31:24] Jacqueline plans for Gastro Girl to continue to do great work for patients. She is working on an educational bus tour, “Gastro Girl to the Rescue Bus Tour!” with partners such as APFED, to bring information to individuals at home. Patients can be guided to resources, like getting a proper diagnosis or finding a provider. It’s a lot of logistics!

 

[32:56] To check out Gastro Girl’s website, visit GastroGirl.com. To learn more about eosinophilic disorders check out the resources there and also visit APFED.org. If you’re looking for a specialist who treats eosinophilic disorders, you can use APFED’s Specialist Finder at APFED.org/Specialist.

 

[33:21] 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.

 

[33:30] Ryan and Holly thank Jacqueline Gaulin again for joining them. Ryan would be happy to go on the Gastro Girl podcast any time to talk more! Holly thanks APFED’s education partners, linked below, for supporting this episode.

 

Mentioned in This Episode:

Jacqueline A. Gaulin

Gastro Girl
Where Can I Find Resources for Eosinophilic Disorders? Special Guest Mary Jo Strobel

GI on Demand

Gastro Girl Channel on YouTube

The Kindness Cure: How the Science of Compassion Can Heal Your Heart and Your World, by Tara Cousineau

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 love when patients get involved in advocacy because there’s no better voice for the patient than those who walk in that path, whatever their health condition or journey is, or even if they have a loved one.” — Jacqueline Gaulin

 

“What Gastro Girl really offers is evidence-based information and resources so that people know that they can come to our site and find sites like APFED and the ACG that are trusted and credible.” — Jacqueline Gaulin


“The biggest message we could get out there is for patients to pay attention to the credible resources. I just caution patients to be mindful and use discretion when going to the sites for your health information.” — Jacqueline Gaulin

 

“To think critically and to ask the right questions will get you, hopefully, a better result in your healthcare journey because you’re not just a passive participant, you’re actively playing an important role in your healthcare with your provider.” — Jacqueline Gaulin

 

About Jacqueline Gaulin

An early champion of a patient-centric, collaborative, and multidisciplinary approach to gastrointestinal health, I worked for several early-stage health-related start-ups, including Revolution Health. During my time with the American College of Gastroenterology (ACG), I led the ACG into the digital age by creating and executing strategic communications plans and patient education campaigns around a variety of digestive health topics and related research, including IBS, IBD, Liver disease and colorectal cancer awareness.

 

After six years with the ACG, my passion for empowering patients inspired me to evolve my popular blog, Gastro Girl, into a digital health company in 2015, Gastro Girl, Inc., to provide patients with access to the GI expertise and evidence-based information and resources they need to follow their doctor’s treatment plan and make informed health care decisions with their care team for better health outcomes.