I'm Aware That I'm Rare: the phaware® podcast

A Mom of Three, a Hidden Killer, and the Specialist Who Saved Her

Balancing life as a full-time teacher, wife, and mother of three, PAH patient, Wendy Mercado, put herself last until her body forced her to stop...

23 Years of Survival and Still Fighting the Darkness No One Sees

Surviving a rare disease isn't always heroic. Sometimes it's...

"Get Your Affairs in Order": She Told Her Doctor She'd Be Back in 20 Years

In 1994, before there were any FDA approved treatments for pulmonary hypertension, Lynn Bouseman was told to prepare for the end. Her pressure...

PH Didn't Just Change One Life, It Changed an Entire Family

When pulmonary hypertension changed their father, Eric Borstein's life, sisters Abby and Ari refused to let ...

She Didn't Just Survive Being Rare. She Made Meaning Out of It.

PH patient, Donna Wallace Harmon can't fly. She lives with limits. She knows tomorrow isn't guaranteed. But Donna refuses to live waiting for "someday." Her motto is simple and defiant: Do the best I can when I can, because nobody knows what tomorrow holds.

Out of Breath, Not Out of Dreams: One Woman's PH Journey Across 79 Countries

Carolyn Mathur was told she had only hours to live. Then days. Then months. Instead of waiting to die, she chose to live—loudly, joyfully, and without apology. Nearly three decades ...

Pulmonary Hypertension Tried to Shrink Her World. She Made It Bigger.

Misdiagnosed at 19, Married After Heart Failure and Living Moment to Moment

Pulmonary hypertension patient, Kathy Ilano belie...

She Was the Caregiver Until Pulmonary Hypertension Made Her the Patient

For Christine Ryan, being ill wasn't the hardest part, letting others care for her was. Diagnosed with pulmonary hypertension after years...

The Dream She Lost at 18 and the Child Who Gave It Back

One of the first questions Amanda Chickie asked after her pulmonary hypertension di...

A New Mother's Greatest Fear: "Am I Going to See My Daughter Grow Up?"
When Lisa Harder became a new mom, she never imagined that shortness of breath would lead to a rare, life-altering diagnosis. Lisa shares h...

From Wedding Bells to a Life-Altering Diagnosis

Cathleen Harrington was young, athletic, and newly engaged when pulmonary hypertension changed everything. Twenty-one years later, after surrogacy, clinical trial...

Why a Social Worker Might Be the Most Important Person on a PH Care Team

When pulmonary hypertension finally gets a name, fear rushes in fast. Social Worker, Evan Holm, is often the first person patients lean on after their right...

Who Cares for the Caregiver When Everyone Else Comes First?

Three Generations. One Gene. A Rare Disease She Couldn't Outrun.

Dawn Ogden has lived her entire adult life under the shadow ...

She Went Looking for Answers and Ended Up Building a Lifeline

Before Zoom, before Facebook groups, pulmonary hypertension patient, Carla Kinsey, had only a voice on a phone line. That loneliness pushed her to do something terrifying: start a s...

PH Tried to Isolate Her. She Turned Loneliness into a Lifeline for Others

Pulmonary hypertension nearly stole Karen Sawyer's ...

A Silent Blood Clot, a 10-Hour Surgery, and a Second Chance at Life

Canadian CTEPH patient, Carol Stokley was healthy, active, and unstoppable, until the day she couldn't breathe. After months of being told not...

From "Untreatable" to Life-Changing: The New Era of CTEPH Care

What happens when patients are told everything looks "normal" but they still can't breathe? Dr. Jenny Yang explains how new testing and team-based ...