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Life Is Good: Eighteen Years of Knowing It
K has been living with kidney cancer since 2008. In that time, she has outlasted more than a handful of surgeries, a clinical trial gone wrong, and a depression that nearly swallowed her whole. Through it all, she holds a quiet certainty that life is good.
500 Calls and Counting: A Love Letter to Our Esophageal Cancer Community
Esophageal cancer affects thousands of Americans each year, yet remains one of the most under-recognized cancers in the country. Meet the Smart Patients community that is changing that — one Zoom call, one conversation, one diagnosis at a time.
Meet Pete: The Man Who Keeps Showing Up
When Pete Ramsey received his stage 4 kidney cancer diagnosis eight years ago, doctors told him he might never walk without a limp or play golf again. Today, he's first in line for a promising clinical trial, and showing others what resilience looks like when you refuse to stop asking "what's next?"
The Sentence That Stopped Everything
Sometimes the most important thing a community can do is stop a conversation mid-sentence. That's exactly what happened when Smart Patients launched Living With It. It turns out, getting it wrong is sometimes how you get it right.
I Am…Planting a Flag
Colorectal cancer is now one of the deadliest cancers for adults under 50, and the blue flags planted across the National Mall this March make that impossible to ignore. But awareness grows not just through advocacy — it grows every time a patient shares their story and helps someone else feel less alone.
After ASH 2025: What Our Community Wants To Know
After ASH 2025, Smart Patients translated six hematology studies into plain-language summaries and opened them up for community discussion. Here's what patients wanted to know — and what the conversations revealed.
I Am…Living in a Diagnostic Wilderness
What happens when your brain is covered in lesions, you can barely walk, and you continue to wait for a diagnosis? This MS Awareness Month, we're telling the story of the diagnostic wilderness, based on the lived-experiences of this Smart Patients community.
The Weight of Being Unheard: Closing the Gap in Obesity Care
World Obesity Day, observed each March 4, is a global call to recognize obesity as a complex chronic disease affecting more than a billion people worldwide. Yet, behind those numbers are personal stories—patients navigating stigma, complex medical realities, and a complicated healthcare system. Understanding these stories is an important step for improving care.
Joyce Graff's 50-Year Fight Against VHL
When Joyce Graff's husband was diagnosed with Von Hippel-Lindau (VHL) disease in the 1960s, only 16 medical articles had been published about the condition in the past century. Fifty years later, Joyce has co-founded the VHL Alliance, created the VHL Handbook, and connected thousands of VHL families worldwide. This is her story—and a reminder that some of the most powerful rare disease advocacy begins with a caregiver who refuses to let others face what she faced alone.
I Am…Holding Everything at Once
Yesterday was National Family Caregivers Day. To honor their often unseen work, we're resharing three caregiver stories from our community. One is about invisible labor, one about a reshaped life, and one about the emotional tightrope caregivers walk every day. Together, they add up to reveal the weight caregivers carry—not just tasks, but love, grief, vigilance, and adaptation all at once.
I Am…Getting Beyond the Diagnosis
Patient communities provide peer support from people who understand what it's like to navigate diagnosis, treatment decisions, and life-altering choices. Read this story to see how love shows up in Smart Patients through connection and caring.
I Am… Living Between Stable and Uncertain
February is Cholangiocarcinoma Awareness Month, a time to spotlight the realities of living with this rare and often late-diagnosed cancer. In this I Am story, patients share what it means to live “stable but uncertain,” navigating treatment decisions, limited options, and the critical need for clear communication and shared decision-making.
I Am…Writing a Note to My Younger Self
What would you tell your younger self about preventing cervical cancer? In this letter shaped by survivor experience and resources from Cervivor, Inc., patients share the hard-won lessons about HPV vaccination, screening, navigating the healthcare system, and why protecting your future self is self-care.
I Am…Rescued by Music, Movement IV: The Chorus
When a Smart Patients member announced "I am declared NED," the community responded with music—Queen's "Bohemian Rhapsody," happy dances, and shared joy that only people living with cancer truly understand. This is Movement IV of "I Am...Rescued by Music," where a three-year conversation with over 1,000 posts reveals how music creates community, celebrates milestones, and reminds patients they're never listening alone.
I Am…Rescued by Music, Movement III: Staying with It
Not all music is meant to make you feel better. In Movement III of I Am…Rescued by Music, Smart Patients explore the songs people turn to when they need permission to feel what hurts — and stay with it.
The Long Wait: Life, Fertility, and Uncertainty in Desmoid Tumor Care
Desmoid tumors are rare, unpredictable, and often managed through active surveillance rather than immediate treatment. In this Ask the Expert discussion, Cleveland Clinic oncologist Dr. Dale Shepard addresses common desmoid tumor questions—from fertility and hormone exposure to clinical trials and evolving standards of care.
I Am…Rescued by Music, Movement II: The Long Notes
Discover how music becomes more than sound, how it transforms into memory, comfort, and connection for people navigating illness and loss. In this second movement of I Am...Rescued by Music, community members share how melodies outlast names, lyrics anchor what fades, and songs become bridges between who we were and who we are now.
Every Six Months, Another Scope: Patients and Experts Frame Life with FAP
Ask the Expert (ATE) sessions surface uncertainties that drive patient anxiety, inconsistent care decisions, and underutilization of evidence-based practices in rare diseases like FAP. When experts clarify these issues, patients shift from fear-driven behavior to informed, proactive decision-making. This ATE closes knowledge gaps and reveals unmet needs, barriers to guideline adoption, and opportunities to design interventions that align more closely with patient behavior and lived experience.
I Am…Rescued by Music, Movement I: The Opening Track
It started with a walk that almost didn’t happen. One perfectly timed song later, this Smart Patients’ community began sharing the music that helps them get through the day. We’re telling this story in four movements, like a concerto with different parts.
I Am…Grateful for You
I Am…Grateful for You reflects on what truly matters in an online patient community—meaningful conversations, shared experience, and peer support that helps patients and caregivers navigate diagnosis, treatment, and uncertainty together. Through powerful member quotes, this end-of-year story shows how Smart Patients creates a trusted, supportive space where people feel heard, informed, and less alone.