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congenital heart disease

Aug 11 2019
Love2

Standing on the Shoulders of Giants

By Advocate, ePatient, Podcasts

Podcast: Play in new window | Download (Duration: 47:09 — 45.1MB) | Embed

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Teresa Wright-Johnson is a giant of advocacy. We stand on her shoulders; she stands on ours. “You matter” coming from Teresa is powerful and uplifting.  Teresa is a Multiple Sclerosis Warrior and Congenital Heart Disease Survivor. A retired Parole Officer, Teresa uses her life experiences to inspire and inform others. She’s careful, conscious, and confident. She sets an example and speaks for the unspoken.

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Jun 30 2019
Love1

Been There, Done That. Open Heart.

By Advocate, Clinician, ePatient, Podcasts

Podcast: Play in new window | Download (Duration: 36:49 — 33.1MB) | Embed

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MarlaJan Wexler, a registered nurse, supports young people with stories similar to hers: congenital heart defects and open-heart surgeries.  In this thirteenth episode in the series about Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care, MarlaJan relates her evolution from child to a person advocating for herself to an advocate for others. She describes the challenge of leveraging her ‘been there, done that’ experience while gauging the readiness of young adults and parents to hear the lessons she’s learned. Finally, MarlaJan opens her heart (so to speak) to her struggles with PTSD and finding compassion for herself.

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