Global Voices, Patient Voices Steve Van Wormer Global Voices, Patient Voices Steve Van Wormer

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

I’m Aware That I’m Rare: the phaware® podcast
Episode 583 - Amanda Chickie

One of the first questions Amanda Chickie asked after her pulmonary hypertension diagnosis wasn’t about life expectancy, it was about motherhood. The answer devastated her. Told that pregnancy was too dangerous, Amanda reflects on what it means to mourn children you’ll never carry, how that grief shaped her mental health, and how hope slowly returned in a form she never expected.

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Patient Voices Steve Van Wormer Patient Voices Steve Van Wormer

The Most Dangerous Phrase in Rare Disease: “You Look Fine.”

I’m Aware That I’m Rare: the phaware® podcast
Episode 566 - Lala Juarez

Diagnosed with idiopathic pulmonary arterial hypertension in her early 20s after years of being dismissed, Lala Juarez knows what it’s like to be told “you look fine” while fighting for breath. In this deeply honest conversation, she shares her journey from misdiagnosis and IV therapy to the shock of being told it was finally “time” for a double lung transplant. Now four years post-transplant, Lala reflects on rediscovering everyday joys, navigating loss and trauma, and why support groups became a lifeline that made her feel seen, validated, and never alone.

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Patient Voices Steve Van Wormer Patient Voices Steve Van Wormer

You Can Grieve and Still Fight: Love, Loss, and Living with PAH

I’m Aware That I’m Rare: the phaware® podcast
Episode 553 - Jasmine Wells

She cried for the life she lost. Then, she fought for the one she has. PAH patient, Jasmine Wells discusses what it really means to grieve the old you while finding purpose in the new. From navigating relationships, infections, and fear of transplant, to leading support groups and fighting misinformation.

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Patient Voices Steve Van Wormer Patient Voices Steve Van Wormer

Scars and Survival: Rebuilding Life After a Devastating Diagnosis

I’m Aware That I’m Rare: the phaware® podcast
Episode 548 - Sophia Esteves

After countless hospital stays, new medications, and near-breaking points, Sophia Esteves found the reason she wanted to live — and it wasn’t just for herself. This episode dives into her spiritual and emotional transformation from patient to powerhouse advocate, and how she now helps others reclaim hope through honesty and grit.

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