Shining A Light On Rare Diseases: Why It Matters
More Than A Diagnosis
Did you know that 1 in 10 people lives with a rare disease? Despite this, many conditions remain underrepresented, misunderstood, and overlooked. Today, on Rare Disease Day, we're shining a light on what it really means to live with a rare disease—because awareness isn’t just about facts and statistics; it’s about real people, real struggles, and real stories. In this special episode, Jes turns the mic to her best friend and co-host, Den, who lives with a rare disease called FAP (Familial Adenomatous Polyposis). Den shares her personal journey—from the long road to diagnosis to...
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The Strength We Didn't Ask For: Navigating The You're So Strong Comments
More Than A Diagnosis
Ever been told, “You’re so strong” and felt… weird about it? You’re not alone. In this episode, we’re unpacking the well-meaning but complicated praise that often gets thrown at people facing illness, grief, and hardship. Jes and Den dive into why people default to calling us “brave” and “inspirational,” how that can feel more like pressure than support, and what we actually need instead. From the myth of the "strong patient" to the emotional exhaustion of always having to perform resilience, we’re breaking down the ways these narratives can isolate rather than uplift....
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Creating The Space We Needed
More Than A Diagnosis
When you’re diagnosed with cancer or a chronic illness, the world around you shifts. Conversations get awkward, support can feel surface-level, and suddenly, you're navigating something huge with no real roadmap. That’s exactly why we started More Than a Diagnosis—to create the space we wished we had when we were first diagnosed. In this episode, we (Den & Jes) share our personal stories, how we reconnected through shared experiences, and why building community matters. We talk about the gaps in conversations around illness, why this podcast isn’t just about medical facts, and what...
info_outlineDid you know that 1 in 10 people lives with a rare disease? Despite this, many conditions remain underrepresented, misunderstood, and overlooked. Today, on Rare Disease Day, we're shining a light on what it really means to live with a rare disease—because awareness isn’t just about facts and statistics; it’s about real people, real struggles, and real stories.
In this special episode, Jes turns the mic to her best friend and co-host, Den, who lives with a rare disease called FAP (Familial Adenomatous Polyposis). Den shares her personal journey—from the long road to diagnosis to navigating a healthcare system that doesn’t always have answers.
💡 In This Episode:
🔹 What Rare Disease Day is and why it matters
🔹 Den’s story: What it’s like living with FAP
🔹 The biggest challenges of having a rare disease (misdiagnosis, lack of research, finding support)
🔹 The reality of explaining your condition—sometimes even to doctors
🔹 How advocacy and community make a difference
🔹 What YOU can do to support rare disease patients
Rare disease awareness starts with conversations like these. If this episode resonates with you, 🔔 subscribe & leave a review to keep the conversation going at www.morethanadiagnosis.org
We see you, we hear you, and we’re in this together.