It Happened To Me Podcast

I almost didn’t post this. 🎙️ I was on the It Happened To Me Podcast recently talking about my chronic pain journey, and I really took some time to consider whether I wanted to share it here. 🤔 There’s always that question in patient experience and advocacy circles: how much of your personal story is "appropriate" to share in professional spaces? Will it be used against you? And I get it. Everyone has their own boundaries for what they share. ➡ I've decided that my lived patient experience is one of the most valuable components of my expertise. 😞 I’ve navigated the behind-the-scenes reality of being a patient—the friction, fear, and exhaustion that comes with constant self-advocacy and fighting to get the care you need. 📱 That’s what we talk about in this episode, and why those “invisible” moments matter most when you’re designing patient-facing care and tools: they shape whether a product gets discarded after its first use—(which is what happens to 68% of health apps)—or becomes a genuine solution patients choose, trust, and rely on. 💡 That insider insight is what I bring to digital health and clinical teams, and choosing to share my journey in meaningful ways is what has generated the most significant "aha!" moments with the innovation leaders I've worked with. 🙏 Thank you to incredible co-hosts Beth Glassman and Cathy Gildenhorn for this opportunity, conversation, and your ongoing support. I might be coming back for a Part 2 sometime soon... Stay tuned! 📣 I'd love to hear from other patient professionals. What's been your experience with making this decision – finding your boundary line? 🎧 Listen: https://lnkd.in/eqkwnpip 📬 Building a patient-facing healthcare product? If you want your solution to earn trust and sustain engagement over time, shoot me a DM. #PatientExperience #MyPatientStory #HealthcareInnovation #DigitalHealth

I almost didn’t post this. 🎙️ I was on the It Happened To Me Podcast recently talking about my chronic pain journey, and I really took some time to consider whether I wanted to share it here. 🤔 There’s always that question in patient experience and advocacy circles: how much of your personal story is "appropriate" to share in professional spaces? Will it be used against you? And I get it. Everyone has their own boundaries for what they share. ➡ I've decided that my lived patient experience is one of the most valuable components of my expertise. 😞 I’ve navigated the behind-the-scenes reality of being a patient—the friction, fear, and exhaustion that comes with constant self-advocacy and fighting to get the care you need. 📱 That’s what we talk about in this episode, and why those “invisible” moments matter most when you’re designing patient-facing care and tools: they shape whether a product gets discarded after its first use—(which is what happens to 68% of health apps)—or becomes a genuine solution patients choose, trust, and rely on. 💡 That insider insight is what I bring to digital health and clinical teams, and choosing to share my journey in meaningful ways is what has generated the most significant "aha!" moments with the innovation leaders I've worked with. 🙏 Thank you to incredible co-hosts Beth Glassman and Cathy Gildenhorn for this opportunity, conversation, and your ongoing support. I might be coming back for a Part 2 sometime soon... Stay tuned! 📣 I'd love to hear from other patient professionals. What's been your experience with making this decision – finding your boundary line? 🎧 Listen: https://lnkd.in/eqkwnpip 📬 Building a patient-facing healthcare product? If you want your solution to earn trust and sustain engagement over time, shoot me a DM. #PatientExperience #MyPatientStory #HealthcareInnovation #DigitalHealth

We were excited to see former guest, and our co-host Cathy Gildenhorn's doctor, Fumihiko Urano quoted in this interesting article from The Washington Post that explores a women's medical mystery. 🚨 Spoiler alert.... she ends ends up being the same rare disease that Cathy has been diagnosed with: #WolframSyndrome. We so appreciate how this article is raising awareness! Dr. Urano estimates that about 3% of people who are Ashkenazi Jewish are carriers for the variant for Wolfram Syndrome. 📖 Read the article: https://lnkd.in/ekve2ZNq 🎙️ Listen to Dr. Urano on Episode 26 of "It Happened To Me" in your fav podcast episode or our our website: https://lnkd.in/e4dDe9qg #raredisease #rarediseases #ashkenazijewish Washington University School of Medicine in St. Louis