the health disparities podcast

The Cost of Not Being Heard: Clinical Dismissal and the Push for Change

In this episode of The Health Disparities Podcast, Dr. Mary O’Connor speaks with Stephanie A. Wynn—author, Crohn’s survivor, and founder of The Stephanie A. Wynn Foundation. Stephanie shares her powerful journey through years of misdiagnosis, medical dismissal, pregnancy loss, and a near‑death experience that ultimately shaped her mission to support underserved IBD patients.
She breaks down the barriers many patients face when navigating Crohn’s disease and ulcerative colitis, and explains how her IBD Patient Navigator® Program helps individuals access specialists, understand their diagnosis, reduce ER visits, and overcome social determinants of health.

You’ll hear insights on:
• The impact of delayed diagnosis and clinical bias
• The difference between IBS and IBD
• Why community health workers are essential to IBD care
• How journaling and documentation strengthen patient advocacy
• Expanding navigator programs into rural and underserved communities

This conversation is a must‑listen for anyone working in gastroenterology, community health, patient navigation, or health equity.

Stephanie A. Wynn:
No one gave me any information. I had to learn everything on my own. After going through doctor after doctor, paying nearly $1,000 out of pocket every seven weeks — even though I had insurance, I was under‑insured — and after medications failed me, I realized there was a breakdown in communication between providers and patients.
That’s when I understood this wasn’t just about awareness. This was my purpose: to help those who cannot speak for themselves while living with Crohn’s disease and ulcerative colitis, two forms of inflammatory bowel disease. That’s why I founded the Stephanie A. Wynn Foundation — out of my near‑death experience of being dismissed, misdiagnosed, and unheard.

Dr. Mary O’Connor:
You’re listening to The Health Disparities Podcast from Movement Is Life. I’m Dr. Mary O’Connor, Chair of the Board of Directors. Movement Is Life advances mobility for women through community programs, education, and advocacy. Our work is grounded in collaboration,
evidence‑based behavior change, and policy engagement — principles that drive lasting, community‑level transformation.
Save the date for our 2026 Annual Summit in Detroit, Michigan, on September 24–25. Visit movement‑is‑life‑community.org for details.
I’m delighted to introduce today’s guest, Stephanie A. Wynn — an accomplished author, Crohn’s survivor, certified patient leader, and founder of the Stephanie A. Wynn Foundation, a nonprofit dedicated to eliminating healthcare and financial disparities for underserved IBD patients. She is also the creator of the IBD Patient Navigator® Program, a six‑month community‑based initiative designed to improve access, reduce emergency‑department visits, and strengthen disease management.
Stephanie blends lived experience with professional expertise to empower individuals too often left behind in our healthcare system. Stephanie, welcome to the podcast.

Stephanie A. Wynn:
Thank you so much for having me, Dr. O’Connor. How are you today?
Dr. Mary O’Connor:
I’m doing great and looking forward to our conversation. Can you share how your lived experiences — as a patient and a community leader — shaped your path? What defining moments made this work feel like a calling rather than a job?

Stephanie A. Wynn:
Absolutely. In 2017, I was diagnosed with Crohn’s disease. Before that, my journey was long and painful.
In 2010, I was pregnant with my daughter. I went full term, but she passed away, and no one could tell me why. They called it an anomaly and told me to “try again in four months.” That didn’t sit well with me.
In 2011, I became pregnant again. At five months, my second daughter passed away. Again, no answers — just “your body rejected the baby.” I knew something was wrong. At my six‑week checkup, my doctor noticed rectal bleeding and scheduled a colonoscopy. I was told it was “just a fissure” and it would heal.
Fast‑forward to 2016: I developed severe urgency, fatigue, nausea, and dramatic weight loss — from 189 pounds to 112. I saw six doctors. The first five ran tests but gave no answers. The sixth doctor reviewed my records and found that my inflammation markers had been high since 2011. No one had told me.
He said, “I think you’ve had Crohn’s for a while.” That’s when I realized the communication breakdown. It shouldn’t take six doctors and years of suffering to get a diagnosis. I also learned two of my cousins had Crohn’s. This disease affects all cultures — not just the Ashkenazi Jewish community, as once believed.
I wasn’t given medication options, clinical trial information, or even basic education. I had to learn everything myself. That’s when I knew my purpose was to help others navigate this chronic illness.

Dr. Mary O’Connor:
It’s painful to hear your story. Is there a relationship between your Crohn’s disease and your lost pregnancies?
Stephanie A. Wynn:
Yes. The sixth doctor pieced together my labs from years prior and said my inflammation markers were high back then. He believed I had Crohn’s during both pregnancies. Had I known, I could have made different decisions — about pregnancy, maternal health, or assembling the right care team. But I don’t fault myself. Now I help other women who look like me navigate the healthcare system without overwhelm.
Dr. Mary O’Connor:
Delayed diagnosis is common, especially for women with IBD.

Stephanie A. Wynn:
Yes — particularly in Black and Brown communities. Culturally, we’re taught not to talk about certain things. Who wants to discuss bowel issues, accidents, or wearing Depends? Many people isolate themselves. Mental health is critical for anyone with a chronic illness. My mom said I was the perfect person to talk about this because she saw how hard I fought to come back. I was malnourished — nothing stayed in my body. I dropped from 189 to 112 pounds in 60 days. My parents were terrified.
Dr. Mary O’Connor:
Thank God you found that sixth doctor. Let’s pivot to your IBD Patient Navigator Program. What problem were you trying to solve?

Stephanie A. Wynn:
When you’re diagnosed with IBD, there’s no navigation team. With cancer, you get an oncologist, a nurse navigator, a multidisciplinary team. With IBD, you’re told, “Here’s your diagnosis. Go get these tests.”
Patients end up in ERs, but IBD can’t be treated there. They need a gastroenterologist or IBD specialist. Many are labeled “non‑compliant,” but often the issue is social determinants of health — transportation, cost, access.
Our program partners with hospitals, clinics, and IBD centers. When a new patient is diagnosed, they’re referred to us. We help them navigate the condition, understand their diagnosis, and access resources like patient‑assistance programs — which I didn’t learn about until a year into paying $1,000 every seven weeks.

Dr. Mary O’Connor:
Your model trains community members as navigators. Why is that important? Stephanie A. Wynn:
We recruit certified community health workers because they’re already doing the work. Adding IBD training enhances their ability to serve.
In our first cohort, we selected 12 navigators from 40 applicants. Many said they’d seen patients like this but didn’t know it was IBD — they thought it was IBS. We ensure they understand the difference.

Dr. Mary O’Connor:
How do you train providers to communicate more effectively?

Stephanie A. Wynn:
We created a provider track. We’re not telling doctors what to do — we’re teaching them how to communicate with Black and Brown patients using culturally responsive techniques. We encourage plain language. Instead of saying “your biomarkers show inflammation in the ileum,” say, “your lab work shows high inflammation, and we need to address it.” We also teach the “teach‑back method” — asking patients to repeat what they heard. Many patients say “I understand” out of anxiety, but they don’t.

Dr. Mary O’Connor:
You also train patients to document symptoms. How does that help?

Stephanie A. Wynn:
I started journaling everything — symptoms, medications, big medical terms. That led me to write Navigating IBD: A Six‑Week Blueprint for Better Gut Health. It includes symptom trackers, medication logs, mental‑health check‑ins, and definitions of common terms. If it takes six weeks to see a GI doctor, a lot can happen. Writing things down helps patients communicate clearly and prioritize their top three questions for appointments.

Dr. Mary O’Connor:
You’ve built this foundation largely on your own. What has been the hardest part? Stephanie A. Wynn:
I never planned to run a nonprofit — I wanted to retire and travel the Mediterranean. But this work is purpose‑driven. We have volunteers and now navigators, plus some funding partners, but relationship‑building is essential. People don’t just find you — you have to show up

Dr. Mary O’Connor:
What’s next for the foundation?

Stephanie A. Wynn:
We’re rolling out the IBD Patient Navigator Program nationwide and expanding our provider training. We currently have 12 navigators across multiple states, including Florida, Illinois, Ohio, the Carolinas, and the DMV area. We’re focusing on rural communities, where disparities are significant.

Dr. Mary O’Connor:
Why is community‑based leadership so important?

Stephanie A. Wynn:
Because community members need trusted resources. When people know support exists where they live, outcomes improve. Community is where healing starts. You see it in Blue Zones — people thrive because they have community.
You can’t do nonprofit work alone. You need community leaders across healthcare and policy to move the mission forward.

Dr. Mary O’Connor:
Stephanie, this has been amazing. Your work ensures that underserved IBD patients are seen, supported, and believed. Your foundation and the IBD Patient Navigator Program are exactly the kind of community‑rooted interventions Movement Is Life champions. For listeners who want to learn more or connect with Stephanie, visit thestephanieawynnfoundation.org.

Thank you to our listeners. Please visit movement‑is‑life‑community.org to learn about our upcoming summit on September 24–25. This concludes another episode of the Movement Is Life Health Disparities Podcast. I’m Dr. Mary O’Connor. Be safe and be well.