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Chris Carneal Chris Carneal

Between Appointments: What Two Sjögren's Doctors Want You to Know

For the estimated 4 million Americans living with Sjögren's disease, the path to diagnosis is rarely straightforward — and the care that follows isn't always better. For Sjögren's Awareness Month, we asked two doctors three questions that don't always make it into the appointment.

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Chris Carneal Chris Carneal

What Chronic Illness Looks Like From the Inside

What does chronic illness actually look like from the inside — not clinically, but on a random Tuesday afternoon when you're figuring it out alone? The latest Living With It conversation gathered the accumulated tools of people who have learned to stay in motion when circumstances would rather stop them.

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Chris Carneal Chris Carneal

I Am On, I Am Off, I Am…Still Here

Parkinson's disease is hard to diagnose and even harder to manage day to day. This April, for Parkinson's Awareness Month, we are sharing the unfiltered voices of patients and caregivers who know exactly what that means.

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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?"

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Chris Carneal Chris Carneal

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.

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Chris Carneal Chris Carneal

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.

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Kathryn Burn Kathryn Burn

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.

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Chris Carneal Chris Carneal

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.

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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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