60 episodes
The IDF Podcast Immune Deficiency Foundation
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- Health & Fitness
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4.9 • 26 Ratings
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This podcast is a service of the Immune Deficiency Foundation, or IDF, a nonprofit organization dedicated to improving the diagnosis, treatment, and quality of life of people diagnosed with primary immunodeficiency, or PI.
"Bold Conversations" is a miniseries on The IDF Podcast that explores the harsh realities of health equity in the United States. Hosted by Dr. Nicole Rochester.
"Undiagnosed" is a narrative docuseries on The IDF Podcast that tells the true stories of PI patients and their long journeys to proper diagnosis and treatment.
To learn more about primary immunodeficiency, the PI community, or to support IDF as a donor or volunteer, please visit the IDF website at www.primaryimmune.org. If you have any questions you would like to be answered, email us at idf@primaryimmune.org.
Special thanks to Bryson Kemp for providing the theme song for The IDF Podcast. www.brysonkempmusic.com
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Ask the expert: PI and fatigue
Dr. Joud Hajjar provides an explanation of the causes and potential treatments for symptoms of fatigue with primary immunodeficiency.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
TRANSCRIPT: https://primaryimmune.org/sites/default/files/PI%20and%20fatigue%20podcast.pdf
View a pdf of this presentation: https://primaryimmune.org/sites/default/files/2024-2-28-IDF-Fatigue.pdf -
The Student: Darcy Gott and the risk of experience
Darcy Gott shares stories of risks involved with having PI as a college student, from mismanaged university health systems to pressure to fit in, and beyond.
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Undiagnosed (feat. Dr. Kelley Hagerich): Two Different Traumas
One of the most universal issues those with primary immunodeficiency face in the U.S. is simply navigating a complicated medical system. Getting a referral to an immunologist can feel absolutely insurmountable, even before the inevitable struggles with prior authorizations and annual reviews from insurance companies for life-changing, or even life-saving, medication.
On this episode of Undiagnosed, Dr. Kelley Hagerich describes the unique shame and difficulty she experiences as a physician with primary immunodeficiency.
Find Dr. Hagerich on LinkedIn: https://www.linkedin.com/in/kelley-hagerich-md-mph-facp-dabom-13896129/
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
How Healers Heal: https://www.amazon.com/How-Healers-Heal-Physicians-Transforming/dp/1961549018/ref=sr_1_1?hvadid=676936602450&hvdev=c&hvlocphy=9012709&hvnetw=g&hvqmt=e&hvrand=5896383303205199856&hvtargid=kwd-2187558197162&hydadcr=22192_13517500&keywords=how+healers+heal&qid=1703012579&sr=8-1 -
Young adult roundtable: college, mental health, and PI.
**This conversation includes the topics of suicidal and self-harm ideation. We understand that not everyone is capable of hearing such conversations. Viewer discretion is advised.**
This episode of the IDF Podcast is presented with support from Takeda, Horizon Therapeutics, CSL Behring, and Grifols.
On this episode of The IDF Podcast, we turned to six young people who are longtime volunteers, Cassie Mummert, Darcy Gott, Ethan McGrew, Jesse McCall, Lance McCall, and Victoria Medl to discuss how they navigate the stress of college, postgraduate studies, and mental wellness with primary immunodeficiency.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. -
ADA-SCID Gene Therapy Update with Dr. Don Kohn
Dr. Don Kohn of UCLA provides an update on emerging gene therapy treatments for ADA-SCID.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. -
Undiagnosed (feat. The Autism Dad): Father and Son
Rob Gorski shaped the way we discuss parenting for neurodivergent children with his acclaimed blog, The Autism Dad. While all three of his sons are on the autism spectrum, his eldest son, Gavin, is diagnosed with CVID, as well.
In this episode of Undiagnosed, Rob candidly discusses his family's journey, mental health, and the struggle of impossible decisions.
Read Rob's blog at https://www.theautismdad.com/.
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20Father%20and%20Son.pdf
This episode is presented with support from Takeda, Horizon, CSL Behring, and Grifols.
Customer Reviews
Love IDF and this episode!
Thank you thank you thank you! Telling the patient's story makes it all so human. We need IDF!
Great info
Super informative and well done!
Love Getting More Knowledge
I love getting any and all knowledge I can and especially up to date information. I don't enjoy reading articles. Hearing a conversation while I am working on things is such a great way to learn more about my CVID and educate myself on new research that is going on, how it effects us and gain more knowledge. Thanks for offering this!!
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