Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care

Young Adults, Parents, alone, together. High school, college, professionals, parent. Plus physician, teacher

Episodes

Introduction

Young Adults Crossing the Threshold from Pediatric to Adult Healthcare

How can we be good hosts to young adults as they cross the threshold from pediatric to adult healthcare? Introductory blog post 12/18/2018

Find post here

#1 Three Young Adults. 22 Years

Three Young Adults. 22 Years.

Interview with Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, frustrating, heart-breaking, and inspiring. Silos and boundaries,  crossing the threshold, primary physician, autonomy, self-management.

Full transcript here

Recorded 1/28/19

Published 3/10/2019

#2 16, Sophomore, All-In

16, Sophomore, All-In

Sara Lorraine Snyder, a fine, eloquent, young woman in high school 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

Full transcript here

Recorded 1/19/19

Published 3/17/2019

#3 Not One Transition. Many

Not one transition. Many.

Alexis Snyder, a parent of a teenager with chronic complex health issues since birth, shares her journey. She speaks about accepting what is, helping her daughter prepare to manage the many transitions in medical care from infancy to adulthood, the challenges of a siloed medical system, and a fear of losing control of her daughter’s health as she let’s go of responsibility. Loving, determined, vulnerable.

Find transcript here

Recorded 1/23/19

Published 3/24/2019

#4 Looking Out for Each Other

Looking Out for Each Other

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.

Find transcript here

Recorded 2/9/19

Published 3/31/2019

#5 Finding a Style That Works

Finding a Style that Works

You’re gonna love hearing from Morgan Gleason, in college, with Juvenile Myositis, a rare autoimmune disease, 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.

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Recorded 1/31/19

Published 4/14/19

#6 What is Today, Isn’t Necessarily Tomorrow

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What is Today, Isn’t Necessarily Tomorrow

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.

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Recorded 2/5/19

Published 04/21/19

#7 Raising Me to be a Good Person

Raising Me to be a Good Person

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. 

Find transcript here

Recorded 4/24/19

Published 4/28/19

#8 Living a Happy, Full Life

Living a Happy, Full Life

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.

Find Transcript here

Recorded 2/19/19

Published 5/26/19

#9 Good Listeners, Good Conclusions

Good Listeners, Good Conclusions

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.

Find transcript here

Recorded 2/15/19

Published 5/30/19

#10 I'm Not Drug-Seeking, I'm in Pain

I’m Not Drug-Seeking, I’m in Pain

This episode concludes the conversations with Fatima Muhammed-Ighile, a mother with two young children, and her mother, Esosa, navigating Sickle Cell Disease. These conversations have been different as Fatima and I are friends. We are familiar with each other’s families. We have shared some of life’s milestones. In this episode, Fatima finds that she’s turning into her mother and describes her experiences as a young mother of color seeking pain relief from a sickle cell crisis as the opiate crisis heats up. Hang on.

Find transcript here

Recorded 5/26/19

Published 6/9/19

#11 Time. I Need Some More.

Time. I Need Some More.

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.

Find transcript here

Recorded: 3/5/19

Published: 6/16/19

#12 Breakthrough to College on the Autism Spectrum

Breakthrough to College on the Autism Spectrum

Today, we talk with Mary Lawler, a teacher and a trailblazer in support of young adults on the autism spectrum transitioning into college. As a Special Education teacher, Mary found that entry to a path to college and success in college wasn’t open for young adults on the autism spectrum. She opened that door, first in high school and then in college, developing a program that created an opportunity for personal breakthroughs. In the patient/caregiver activist world, we often talk about ‘patients included.’ Mary is an expert in ‘parents included.’ Mary’s leadership and compassion inspire me.

Find transcript here

Recorded 5/15/19

Published 6/23/19

#13 Been There, Done That. Open Heart

Been There, Done That. Open Heart.

MarlaJan Wexler, a registered nurse, supports young people with stories similar to hers: congenital heart defects and open-heart surgeries. 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.

Find transcript here

Recorded 4/9/19

Published 6/30/19

#14 But You Can! Total Self Care at 13

But You Can! Total Self-care at 13

Lauren Reimer-Etheridge lives well with a rare condition where her gut can’t absorb nutrition. Incompatible with life, Lauren takes and totally manages all her nutrition through her veins since age 13. In this fourteenth podcast episode in the series about Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care, Lauren talks about her advocacy with parents and young adults: showering, self-management, drugs, sex, and rock and roll.

Full transcript here

Recorded 4/12/19

Published 7/7/19

#15 Salt in My Soul: An Unfinished Life

Salt in My Soul: An Unfinished Life

Mallory Smith lived and died with Cystic Fibrosis. Mallory wrote, “Salt in My Soul: An Unfinished Life.” In this fifteen episode of Young Adults with Complex Conditions, I speak with mother, Diane. Mallory was Captain of her own ship, lived HAPPY, and shares many lessons with us. Heart-warming affirmation! Tragic, tragic, tragic!

Recorded 6/24/19

Published 7/14/19

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