Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

I Am…Building a Courageous Community 

Two fathers turned the experience of caring for a child into lifelong missions to support families facing pediatric alopecia and childhood cancer. This story explores how nonprofit leadership and peer-to-peer communities like Smart Patients help parents and children navigate fear, uncertainty, and treatment decisions together.

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Chris Carneal Chris Carneal

The Making of a Podcast: Behind the Mic With Smart Patients

Ever wonder what it’s really like to record your first podcast? Hear from three Smart Patients community members who did just that—and shared every surprise, tech hiccup, and empowering moment behind the mic. Get inspired and explore our community-built podcasting toolkit.

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Chris Carneal Chris Carneal

I Am…Finding Delight

Even during illness, uncertainty, and the heaviness of the holiday season, moments of joy still emerge. In this Smart Patients community story, members share how small, everyday delights—nature, connection, laughter, and gratitude—help them cope with chronic illness and serious health conditions. Together, these shared moments remind us that we are more than our diagnoses, and that joy can still find us, one small moment at a time.

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Chris Carneal Chris Carneal

Understanding Pancreatic Cancer Together: Patients Talk About What Matters

Smart Patients and the Pancreatic Cancer Action Network hosted an Ask the Expert session with Dr. Efrat Dotan, GI Medical Oncologist at Penn Medicine during Pancreatic Cancer Awareness Month. Participants opened up about the symptoms that get missed, the genetic risks families don’t hear about soon enough, and the treatment decisions that keep them up at night.

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Chris Carneal Chris Carneal

I Am…Living One December at a Time

For Crohn’s & Colitis Awareness Week, we’re sharing a firsthand story from someone who has lived with Crohn’s disease for more than 30 years—highlighting the physical, emotional, and dietary challenges that December can bring.

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Chris Carneal Chris Carneal

I Am…Trying To Live Normally with GERD

GERD and acid reflux often peak during the holidays, when heavier meals and disrupted routines can trigger painful flare-ups. In this Smart Patients story, community members share what GERD really feels like and what helps.

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