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. 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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Episode Notes

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Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here
Contents with Time-Stamped Headings
to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Opening. 1

Episode introduction on the trike 01:21. 1

Introducing Esosa Ighile 20190215 06:04. 2

Health is fragile 07:17. 2

What does healthy look like? 07:46. 2

Commander of their own ship 08:19. 3

She won the fight 12:11. 4

Long distance challenges 13:03. 4

Emergency treatment gone wrong 15:24. 5

Yellow card for treatment plan 18:06. 6

Person standing in front of a doctor knows their body better than the doctor 19:07. 6

The whole family feels it. Where should I be today? 21:05. 6

Medical coverage, a right for us all American citizens 22:48. 7

Episode close 25:03. 8

Extra 25:50  8
Previously in series (newest on top)
#22 Living a happy, full life - Fatima Muhammed-Ighile

#018 Raising Me to be a Good Person -Morgan and Amy Gleason

#017 What is Today, Isn’t Necessarily Tomorrow - Amy Gleason

#016 Finding a Style that Works - Morgan Gleason

#014 Looking Out for Each Other - Alexis and Sara Snyder

#013 Not One Transition. Many - Alexis Snyder

#012 16, Sophomore, All-in - Sara Snyder

#011 Three young adults. 22 years - Jill Woodworth

Young adults crossing the threshold from pediatric to adult healthcare
Links
Sickle Cell Coalition

Notes
Credits
Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer

Photo by Andrae Ricketts on Unsplash
About the Show
Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  We will listen and learn about what it takes to adjust to life's realities in healthcare’s Tower of Babel.  Let's make some sense of all this.

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The Show
Opening
Esosa: So, when they were very young, I think they used to think I was the worst mom in the world. Because I was teaching them independence. They see that whenever they got sick, I would say, "Okay, medication time and we are going to go about our business. In my heart of hearts, I was always burning up in there. But I had to encourage them so that they can put one foot in front of the other and move on. Both of them had to learn at a young age that they are the commander of their own ship.
Episode introduction on the trike
Good morning. It's about 6 a.m. I'm out riding my trike and doing an experiment here just using my earbuds and my iPhone.