ONCE UPON A GENE - EPISODE 209
A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies
I'm joined by two new, rare moms, Emily and Katie, to discuss the topic of having additional children after you've had a child with a rare disease.
How did your experience with your first born children's genetic conditions shake your hopes and fears about having a second child?
Once you connect with the rare disease world and learn about all of the rare disease possibilities, you know rare isn't so rare. The second pregnancy is different because you're aware of the chance that something can happen more than once and your eyes are open to the potential outcomes.
Does having the knowledge the second time take away from the joy?
It definitely does. We had genetic testing done on our second child and it was terrifying until we got results. Throughout the entire pregnancy, I didn't feel safe.
Did you wish you had a typical experience and did you feel bad for feeling that way?
You expect challenges to happen again, and it's a self-preservation mentality, not wanting to set yourself up to be disappointed. I do feel guilty about wanting a typical parenting experience, but that's what everyone wants. That's not to say that you don't love and appreciate your parenting experience with your child who has disabilities. We don't want to see our children suffer and we don't want to suffer as parents.
What is your best advice for families thinking about having another child?
It's important for parents to acknowledge all of their feelings and the complexities of their feelings. It's complicated, so reach out to other people you know who have been through it. Talking to others will help to solidify your decision to continue growing your family, despite how terrifying it might feel.
CONNECT WITH KATIE
A Very Rare Adventure
CONNECT WITH EMILY
LINKS AND RESOURCES MENTIONED
ONCE UPON A GENE - EPISODE 151 - Rare Friends Forever - Hanging Out and Showing Some Love to Brene Brown with Katie Lloyd and Adam Johnson
ONCE UPON A GENE - Episode 125 - A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure Katie Lloyd
ONCE UPON A GENE - EPISODE 205 - Mastering the Art of the Supermarket Answer When Someone Asks, How Are You with Jennifer Siedman
CONNECT WITH EFFIE PARKS
Built Ford Tough Facebook Group
November 30, 2023
What do you think about psychedelics? Does your mind wander to late-60’s Beatles tunes? What colors do you see? Have you heard about their therapeutic uses in medicine?
Seems like hippy-dippy fringe medicine stuff, right? We're talking magic mushrooms, LSD, and ketamine (among other substances) here!
Can you guess which academic research institution has the most robust psychedelic research department in the US?
It’s the Johns Hopkins Center for Psychedelic and Consciousness Research!
A recent (11/16/23) Johns Hopkins Congressional Briefing, titled “What’s Next for Psychedelics” featured a panel of experts discussing psychedelics in medicine, and Your Doctor Friends think the future looks PROMISING!
Their discussion centered on the potential cost-saving benefits of utilization of psychedelics in treatment of a variety of conditions, including addiction, anxiety, depression (including that associated with Alzheimer’s disease), eating disorders, OCD, and post-treatment Lyme disease.
Are you ready to break on through to the other side and talk medicinal psychedelics with us??
Also, we end with a little dessert from Jeremy highlighting recent data recommending the benefits of routing iron level screening, given new data on the high prevalence of iron deficiency, and why you might want to bring it up to your healthcare provider!
Resources for today's episode include:
The Johns Hopkins Congressional Briefing Series page, with link to the 43-minute panel presentation titled "What's Next For Psychedelics".
A New York Times article about Johns Hopkins psychiatrist Dr. Roland Griffiths, titled "A Psychedelics Pioneer Takes the Ultimate Trip".
The FDA Draft Guidance document titled "Psychedelic Drugs: Considerations for Clinical Investigations. Guidance for Industry."
A Johns Hopkins Magazine article titled "Preparing for a new era of psychedelic treatment".
A New York Times article titled "More Than a Third of Women Under 50 are Iron-Deficient".
For more episodes, limited edition merch, or to become a Friend of Your Doctor Friends (and more), follow this link!
This includes the famous "Advice from the last generation of doctors that inhaled lead" shirt :)
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Find us at:
Email: [email protected]
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@your_doctor_friends (IG) Send/DM us a voice memo/question and we might play it on the show!
@JeremyAllandMD (IG, FB, Twitter)
November 30, 2023
In this episode, Ajit Singh, PhD, Managing Director and General Partner at Artiman Ventures, shares his insights on various aspects of healthcare, his approach to leadership and decision-making and his thoughts on the future of healthcare. From AI to oncology to neuro technology, Ajit covers it all.
November 30, 2023
As a community-centered, rural hospital, we know the struggle of existing independently when resources are scarce. Unfortunately, sometimes hospitals have no other choice but to accept a merger or acquisition. How do rural hospitals maintain the trust of their community as they face hard choices and dramatic change?
On today’s episode, hosts JJ and Rachel talk with Letitia Fecher, Vice President, Public & Community Health Systems Practice Lead, with Jarrard Inc. about change management in rural hospital merges and acquisitions.
Follow Jarrard Inc. on social media and online!
Follow Rural Health Rising on Twitter!
Follow Hillsdale Hospital on social media!
Audio Engineering & Original Music by Kenji Ulmer
November 30, 2023
November 30: Today on the Conference channel, it’s an Interview in Action live from the 2023 CHIME Fall Forum. On this episode Reid Stephan, VP and CIO at St. Lukes speaks with David Higginson, Chief Operating Officer and Chief Innovation Officer at Phoenix Children's Hospital. They discuss innovative strategies in healthcare, with a focus on home care and utilization of technology according to patients' needs and accessibility. David stresses the importance of gathering patient data between visits and leveraging simple tech solutions, like text messaging, to better identify and resolve issues promptly. The episode also touches on the challenges and benefits of digital patient experience, the role of CIOs as change agents, and the necessity for innovation in healthcare to lower costs and increase quality. Is there a risk in running too quick to full deployment of technology in the home?Subscribe: This Week HealthTwitter: This Week HealthLinkedIn: Week HealthDonate: Alex’s Lemonade Stand: Foundation for Childhood Cancer
November 30, 2023
Stay informed to navigate the complex healthcare credentialing process effectively and ensure organizational compliance.
In this episode, we have Brent Althoff, Director of Credentialing Operations, as part of the entire series on Rethinking Compliance with MedTrainer. Brent sheds some light on the key drivers behind credentialing and its impact on compliance and revenue cycle. Using his vast experience with payers and providers, Brent addresses the complexities of credentialing, highlighting the need for automation tools and strategies to streamline the credentialing process, improve efficiency, and maximize the revenue cycle. Brent also offers guidance on the best ways for executive leadership teams to support and enhance the efficiency of credentialing. He also identifies emerging trends in credentialing and how healthcare institutions can stay ahead of the curve.
Join us as we dive deep into the world of credentialing with Brent Althoff, and discover the key areas to focus on to ensure compliance, optimize revenue, and provide quality care.
Connect with and follow Brent Althoff on LinkedIn.
Follow MedTrainer on LinkedIn.
Explore MedTrainer’s Website.
November 29, 2023
In this episode of "On the Road to Gambia," host Dr. Lisa Herbert interviews Dr. Anila Ricks-Cord, a board-certified OB-GYN. They discuss Dr. Anila's career, her motivations for pursuing medicine, and her role as an OB-GYN hospitalist. Dr. Anila shares her experiences in dealing with challenging situations and her commitment to improving women's health, particularly in areas with high maternal mortality rates like Gambia. She also shares a powerful story about a Haitian immigrant patient, highlighting the importance of patient advocacy and cultural sensitivity in healthcare.
In this podcast, we discuss
Dr. Anila's background, career, and current role as an OB-GYN hospitalist
Dr. Anila's motivation for pursuing a career in medicine and her commitment to holistic care and empowering women
Discussion on the challenges faced in the Gambia, including high maternal mortality rate and limited resources
Importance of using both the art and science of medicine, listening to patients, and recognizing boundaries
Dr. Anila's powerful story about a Haitian immigrant patient and the impact it had on her
Importance of advocating for patients who lack access to healthcare and preventing burnout
Dr. Anila's vision for improving women's health in the Gambia
Emphasis on reciprocal exchange, learning from others, and implementing new knowledge
November 29, 2023
Are you angsting over the potential impact of generative AI on your work? Are you hyper-dialed into ethical considerations around the potential for copyright infringement, data ownership, and authorship when using generative AI tools like ChatGPT? Whatever your questions or concerns are about generative AI, this technology is poised to transform how we create continuing education content for health professionals.
Today’s episode is the first in a 2-part series of episodes that focus on writing, reasoning, and the ethical considerations surrounding generative AI. My guest is Núria Negrao, a medical writer specializing in CME/CPD and a generative AI enthusiast who's been playing with ChatGPT since it burst onto the horizon in 2022.
We review different ways to use gen-AI tools like Bing and Bard for tasks like summarization and identifying key points, and touch on copyright issues, using OpenAI's API, and how to use gen-AI to create formulas that support scientific writing. And we also explore the value of bringing a human perspective and cultural knowledge into the writing and content creation process and the potential benefits and legal challenges of using AI tools, like ChatGPT.
(03:30) - Introducing Núria
(07:06) - The questions she was tinkering with and asking in the early phases of Generative AI
(10:10) - Her thoughts on navigating the GenAI landscape for beginners
(12:50) - Practical use cases of Generative AI implementation
(17:18) - Handling the client conversation around using GenAI
(22:50) - Listener Question: Around legal and ethical implications for submitting your own text for analysis by generative AI
(29:11) - Exploring the dangers of using Generative AI as our collaborators
Click Here for the Transcript
API = application programming interface
Núria is a medical writer in the continuing education field. Núria brings her scientific training as well as her vast experience in teaching effective science and medical communication to every project, helping craft engaging and effective educational experiences that support, inspire, and motivate learners.
Connect with Núria
Grab Your Gen-AI Cheatsheet
About Write Medicine
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November 29, 2023
Lean into a conversation with my friend and colleague, Ann Brown, as we discuss how to talk to kids about war and violence. Ann is a Jewish Cantor, Educator, and incredible woman. We talk about ways to discuss war and violence with children in developmentally appropriate ways. And Ann walks us through a 10-step map that lays out how that conversation can happen through a values-driven lens. It's remarkable and trauma-informed.
Ann Brown has been a parenting educator and consultant for over forty years, working with individual parents, couples and groups. She taught her first parenting class when she was still pregnant with her first child, which means she really didn't know what raising kids was all about. Over the decades, she has raised her two sons, taught classes at Marylhurst Early Childhood Center in Oregon City, trained as a Waldorf teacher, created parenting support groups for the Hannah Andersson Family Foundation, and led workshops in California and Oregon. Her favorite gig, however, was co-hosting a cable television show with Dr. Amy, called "The Motherload", in which she and Dr. Amy answered parenting questions from callers and on-camera guests.
If you'd like to consult with Ann, you can reach her at [email protected]
Ann recommends getting accurate information about the conflict from: Al Jezeera or Ha Aretz (an Israeli Newspaper in English).
Dr. Amy's Newsletter
Learning Collaborative - The ConnectED Collab Invitation
Dr. Amy Youtube
Top 10 Guiding Principles When Working with Children & Families
Start Creating Boundaries Handout & Script
Finding Calm to Prevent Overwhelm
Don’t Forget! Follow Dr. Amy on LinkedIn, Facebook, and Instagram
For more information visit www.doctoramyllc.com
November 29, 2023
Featuring articles on levothyroxine for unstable brain-dead heart donors, amivantamab in lung cancer with EGFR exon 20 insertions, amikacin to prevent ventilator-associated pneumonia, and tarlatamab in small-cell lung cancer, a new series on wearable digital health technology with a review article on digital technology for diabetes; a case report of a man with sickle cell disease and right hip pain; and Perspectives on coverage for emerging technologies, on methadone clinic engagement and cancer care, and on learning from the bomb. Supplement to the New England Journal of Medicine, Vol. 389, No. 22.
November 29, 2023