Episode 566 - Lala Juarez

The Most Dangerous Phrase in Rare Disease: "You Look Fine." 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. Her story is one of preparation, advocacy, resilience, and learning that healing doesn't mean going back to who you were, but becoming someone more present, empathetic, and aware that rare doesn't mean invisible. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.