Hey there, glad you could join me. I’d like to pause and take stock of the past six months and look a bit to the future. We’re in the middle of a series with Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care. I’ve published 7 episodes in this series. I’m taking a brief break on the series and traveling to Spain. While we’re here together I’ll look back at the series, talk about Spain, and reflect on my patient/caregiver activism journey. Read More
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.
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.
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!
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
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. The third interview in a series on Young Adults with Complex Conditions Transitioning from Pediatric to Adults Medical Care. Read More
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
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. There may be as many as 7,000 rare diseases. The total number of Americans living with a rare disease is estimated at between 25-30 million. That’s around 8% of the population.
Patient participation in rare disease research, both wet and dry (in a lab with benches and with computers) is, frankly, rare. Of course, patients are subjects of research, but that’s not the kind of participation I’m talking about. I’m referring to patient involvement in 1) setting priorities, 2) study leadership and design, 3) improved access to clinical trials, 4) preparation and oversight of the information provided to participants, 5) post-study evaluation of the patient experience, and 6) the dissemination and application of results. Read More
Health Hats, The Blog is changing. I’m the same 2-legged white man of privilege, living in a food oasis, who can afford many hats, as I was a couple of months ago. But my advocacy, ministry, channel are changing. I fell into this podcasting fellowship and here I am a podcaster, too. I’m having a blast. Loving the sound medium. The blog has been a mouthpiece for me. I tested the limits of showing how full of myself I can be. And it allowed me to think out loud.
You are my loyal audience. I write and produce for you. I start with a germ that’s mine. A question, an idea, an initiative I want to think through. Then I go to it with you in mind. I ask myself, why should you care about whatever? It’s important to me, why do I think it should be important to you? As I write or produce, the germ sprouts, grows into something unexpected, almost all the time. I’m amazed.
The thing about blogging is that’s almost always one-way. I average 1.3 comments per blog post over 6+ years. I’m getting a bit tired of myself. There’s so much about which I know enough to be dangerous. Podcasting can be a two-way street. Me learning about what interests me. I also recognize that some people like to read, others like to listen, and still others like to watch. So, I’m trying to develop all three media: blog, podcast, YouTube videos.
I’m part of a podcasting fellowship: eight weeks of daily coursework with 300 other budding podcasters from all over the world. We created a supportive community during the course. Now that it’s over, over 100 of us are still engaging, sharing, cheerleading, learning together. A model virtual community (I smell another blog post). I’m a budding sound engineer, producer, and interviewer. I added transcripts for readers and deaf folk. Be still my beating heart. Already, I’ve had an ode to my boy, Mike Funk, met men in caregiving, channeled clowns in the doctors office, explored health equity. I’m working on a series about young adults transitioning from pediatric to adult medicine from the young adult and parent perspective, and conceiving a series about pain management.
But I never asked you if this change to blogging plus podcasting was OK with you, what you think of it, or for your constructive criticism. This is me asking you now.
- How do you like this transition and change I’m making?
- Do you listen to the podcast? Read the show notes?
- Do you still find the blog posts, show notes, written stuff valuable?
- What do you think about the topics, the guests, the music, the quality of sound, the noise?
- How about the length? It’s ranged from 20 to 68 minutes.
- I’m using my cousin’s Joey van Leeuwen’s music. Isn’t he great!?
I was going to send you a survey, but I’d rather just hear from you. I’m eager for observations, atta boys, I’m outta heres, creative ideas, topic ideas, interviewees?
Talk to me, please. Email me at firstname.lastname@example.org!
And thank you for your loyalty. Weekly for six years, OMG! We’ve been together a long time in blog years. Onward!