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young adults | Danny van Leeuwen Health Hats

Been There, Done That. Open Heart.

By | Advocate, Clinician, ePatient, Podcasts | One Comment

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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Breakthrough to College on the Autism Spectrum

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A conversation with Mary Lawler, a trailblazer and educator, supporting young adults on the autism spectrum for success in college. Welcome to this twelfth episode in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

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Time. I Need Some More

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A conversation with Dr. Tanilla Brown, a pediatrician and Internal Medicine doc who thinks about the challenges of enough time with patients, family-focused care, and the lifespan of transition. 

Welcome to this eleventh episode in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

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Good listeners. Good conclusions.

By | Advocate, Caregiver, ePatient, Podcasts | One Comment

Esosa Ighile raising young women with Sickle Cell Disease to be commanders of their own ship. The whole family feels the pain of their pain. A fight for health equity. Welcome to this ninth episode in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

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Living a Happy, Full Life

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Fatima Muhammed-Ighile learned to advocate for herself and has begun to advocate for others with Sickle Cell Disease. People who have regular lives and struggles and hopes and dreams also have sickle cell disease and are just trying to live a happy life, a happy full life. That’s all. Welcome to this eighth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

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Raising Me To Be a Good Person

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Morgan and Amy Gleason sound like pretty normal daughter and mom growing out of the self-centered teen years into mutually appreciative adults. In this episode, we’ll hear about that journey toward respect and shared support leavened with humor about the ridiculousness of some of that journey. Welcome to this seventh in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

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What is Today, Isn’t Necessarily Tomorrow

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Amy Gleason is Morgan Gleason’s mom. We discussed parenting style, cues for calibrating autonomy, the importance of parent support groups, managing depression, self-care, and advocacy by transitioning young adults. Welcome to this sixth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

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Finding a Style that Works

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You’re gonna love hearing from Morgan Gleason, already a veteran advocate after making a YouTube video when she was 15 that went viral about her frustrations as a patient in the hospital. Welcome to this fifth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care. Let’s jump right in!

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Looking Out for Each Other

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Welcome to this fourth in a series about Young Adults with complex medical conditions transitioning from pediatric to adult medical care. This interview with mother and daughter, Alexis and Sara Snyder, exploring their evolving relationship. Transitioning to plans about Sara with Sara. Sara had to know her body well and communicate what she knew. I’m impressed that Sara was pretty clear about what she wasn’t clear about. Sara values her mom’s health and well-being. Read More

16, Sophomore, All-In

By | ePatient, Musician, Podcasts | One Comment

Welcome to the Health Hats podcast series about young adults transitioning from pediatric to adult medical care. In this series, I interview young adults with complex medical conditions, their parent or guardians, point-of-care clinicians caring for these young adults, and whoever else I find of interest in this fascinating, frustrating, heart-breaking, and inspiring world.

This second podcast of the series is with Sara Lorraine Snyder, a fine, eloquent, young woman who has lived her entire life with chronic medical issues. She’s learning to drive her own healthcare and manage the transition to adult medical care.

“If you were playing with the team for football or whatever and then they come you come in the next practice and half of your team is completely new people that you don’t even know and  then you don’t know how to effectively work with that team so that in the end of the day you can win or like achieve, whatever you need to.” Sara Lorraine Snyder

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