Patrick Gee, who himself underwent years of dialysis and a kidney transplant, discusses advocating for people with kidney disease, people of color, and people in his community in Virginia who lack access to care and information about their health.

After her infant son suffered due to a succession of medical errors, Sue worked tirelessly to prevent this from happening to others, starting by writing letters to the health care regulatory bodies until she and a group of mothers had formed a nonprofit and put out guidelines for the regulatory bodies to follow. In the … Continue reading A Mom Fights for Patient Safety, with Sue Sheridan →

Dana Lewis was diagnosed with Type I Diabetes at 14. She struggled as a teenager with the cumbersome equipment, but struggled more as a college student without parents to help wake her when he glucose meter went off in the night. Since then, her now-husband and others along the way have created an open-sourced software … Continue reading A DIY Medical Device Brings Hope with Dana Lewis →

Christie Mangir, breast cancer survivor, entrepreneur, and patient advocate, joins Harlan Krumholz to discuss what it means to be the “perfect patient.” Throughout her treatment, Christie felt pressure to do everything the doctor told her. At the same time, through a system of keeping spreadsheets on her symptoms, and a commitment to asking questions and … Continue reading Redefining “Perfect Patient” with Christie Mangir →

Andrea Downing is living with a BRCA1 mutation, which puts her at a high risk for cancer, the same disease that she saw her mother and grandmother endure. Although at first her diagnosis created a pervading feeling of loneliness, Andrea has found a group on Facebook, the BRCA Sisterhood support group, to share information and … Continue reading Previving with a Sisterhood →

When e-Patient Dave was diagnosed with kidney cancer, he was given an estimated 24 weeks to live. Now, twelve years later, Dave sits down for an interview with Harlan Krumholz in which he delves into just how he became an engaged patient, and what “e-Patient” means to him. Dave’s journey began when he first joined … Continue reading Becoming an e-Patient →

Bray became involved in healthcare when she was a participant in a study for which she received a heart device, and wasn’t notified when the study was ended prematurely. Bray’s condition, Patent Foramen Ovale (PFO) with migraines, greatly improved with her new device. But other study participants hadn’t fared so well. Bray started her own … Continue reading Rearranging Research (with Bray Patrick-Lake) →

When Sara was 16, she was misdiagnosed as having dystonia, a neurological condition. When she was 32, she was finally diagnosed, correctly this time, with Parkinson’s disease, a neurological disorder that affects movement, speech, and daily life. With little information from her doctor and a newborn in tow, Sara set out on a journey of … Continue reading Flipping the Classroom (with Sara Riggare) →

In the 1980s, Gregg Gonsalves had a key role in one of the first examples of patient empowerment movement worldwide. When the information around HIV/AIDS was scarce, Gregg joined Act Up, the AIDS Coalition to Unleash Power, spawning a career of patient advocacy in public health research and achieving breakthroughs in funding of research that … Continue reading The Dawn of the Patient Revolution (with Gregg Gonsalves) →

After being diagnosed with a high-risk heart condition, Hugo Campos needed to have implanted a device that constantly records his heart rhythm and delivers an electric shock when the rhythm goes awry. Hugo’s heart depends on the device, and yet, when Hugo wanted to understand and monitor his own rhythm, he found that only his … Continue reading It’s Your Own Medical Data, But You Can’t See It (with Hugo Campos) →

Soon after Liz had a seizure at work, she was diagnosed with a brain tumor. In her personal blog, she started posting about what she was experiencing, with an unexpected consequence: people all over the world started sharing stories like hers. Soon, Liz’s blog, “The Liz Army” became a a place to share experiences, fears, … Continue reading The Liz Army: How a personal Blog became a Strong Patient Community (with Liz Salmi) →

In this introductory episode, Dr. Harlan Krumholz explains the unlikely source of this podcast’s title and what he hopes this series will achieve.