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Indhold leveret af Immune Deficiency Foundation. Alt podcastindhold inklusive episoder, grafik og podcastbeskrivelser uploades og leveres direkte af Immune Deficiency Foundation eller deres podcastplatformspartner. Hvis du mener, at nogen bruger dit ophavsretligt beskyttede værk uden din tilladelse, kan du følge processen beskrevet her https://da.player.fm/legal.
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National Geographic photographer and conservationist Jaime Rojo has spent decades capturing the beauty and fragility of the monarch butterfly. Their epic migration is one of nature’s most breathtaking spectacles, but their survival is under threat. In this episode, Jaime shares how his passion for photography and conservation led him to document the monarchs’ journey. He and host Brian Lowery discuss the deeper story behind his award-winning images, one about resilience, connection, and the urgent need to protect our natural world. See Jaime's story on the monarch butterflies at his website: rojovisuals.com , and follow Brian Lowery at knowwhatyousee.com .…
Indhold leveret af Immune Deficiency Foundation. Alt podcastindhold inklusive episoder, grafik og podcastbeskrivelser uploades og leveres direkte af Immune Deficiency Foundation eller deres podcastplatformspartner. Hvis du mener, at nogen bruger dit ophavsretligt beskyttede værk uden din tilladelse, kan du følge processen beskrevet her https://da.player.fm/legal.
Transcript: https://primaryimmune.org/sites/default/files/Cx20%20ep%202%20transcript.pdf In part two of our pilot episode, Heartbreakingly Beautiful, Victoria Medl and Cassie Mummert continue their discussion about hope, support, and learning who to trust with vulnerable truths about their health. Content warning: This podcast features sensitive subject matter such as mental health, bullying, religion, suicide, and confronting mortality. The views expressed in this podcast do not necessarily reflect the views of the Immune Deficiency Foundation, its employees, sponsors, or Board of Trustees. Listener discretion is advised.
Indhold leveret af Immune Deficiency Foundation. Alt podcastindhold inklusive episoder, grafik og podcastbeskrivelser uploades og leveres direkte af Immune Deficiency Foundation eller deres podcastplatformspartner. Hvis du mener, at nogen bruger dit ophavsretligt beskyttede værk uden din tilladelse, kan du følge processen beskrevet her https://da.player.fm/legal.
Transcript: https://primaryimmune.org/sites/default/files/Cx20%20ep%202%20transcript.pdf In part two of our pilot episode, Heartbreakingly Beautiful, Victoria Medl and Cassie Mummert continue their discussion about hope, support, and learning who to trust with vulnerable truths about their health. Content warning: This podcast features sensitive subject matter such as mental health, bullying, religion, suicide, and confronting mortality. The views expressed in this podcast do not necessarily reflect the views of the Immune Deficiency Foundation, its employees, sponsors, or Board of Trustees. Listener discretion is advised.
Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.1%20Transcript.pdf Jalisa Clark is a Research Fellow at the Center on Health Insurance Reforms (CHIR) at Georgetown University’s McCourt School of Public Policy. Today, she joins Dr. Nicole for a deep dive into inequitable health insurance practices in the U.S. 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/Mental%20health%20tips.pdf Becky Lenning is the owner and clinical director of Yellow Lotus Clinical Services for Healing and Wellness, where she brings over fourteen years of clinical experience as a licensed professional counselor to her practice. To learn more, volunteer, or donate, visit primaryimmune.org/donate. Presented with support from Takeda and CSL Behring.…
CONTENT WARNING: This episode contains discussions of suicide planning. If you need help, call the National Suicide Hotline at 988. Transcript: https://primaryimmune.org/sites/default/files/Undiagnosed%20Matt%20Lesser%20Transcript.pdf. The story of Matt Lesser is one that's marked, of course, by persistence, but also by vulnerability, self reflection, and hard earned humility. Join us as we explore the impossible crux of mental health, splintered family, and primary immunodeficiency. Your support of the Immune Deficiency Foundation helps ensure people like Matt have what they need to thrive with PI. Please visit primaryimmune.org/donate. To learn more, volunteer, or donate, visit primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. Support for the Immune Deficiency Foundation programs for undiagnosed and underserved populations is provided by CSL Behring.…
TRANSCRIPT: https://primaryimmune.org/sites/default/files/Covid%2C%20Flu%2C%20RSV.pdf This informative Q&A session offers crucial insights for patients, caregivers, and healthcare professionals. Don't miss this opportunity to enhance your understanding of immunization in the context of PI and learn practical steps for safeguarding health during challenging seasons. View Dr. Ward's slides: https://primaryimmune.org/sites/default/files/Ward%20COVID_flu_RSV%20091924.pdf View Dr. Keller's slides: https://primaryimmune.org/sites/default/files/IDF%20Vaccines%20PID%202024-%20Keller.pdf To learn more, volunteer, or donate, visit primaryimmune.org/donate. 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/Transcript%20-%20GI%20Connection.pdf View a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20PI%20and%20GI%20connection.pdf Peter J. Mannon, M.D. discusses common gastrointestinal symptoms for people with primary immunodeficiency as well, and discusses the interesting link between the two. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. To learn more, volunteer, or donate, visit primaryimmune.org/donate.…
Transcript: https://primaryimmune.org/sites/default/files/LUKE%20WALL%20antibody%20deficiency%20q%26a.pdf Dr. Luke Wall discusses antibody deficiencies in this Q&A from October 24, 2024. 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/Cx20%20ep%202%20transcript.pdf In part two of our pilot episode, Heartbreakingly Beautiful, Victoria Medl and Cassie Mummert continue their discussion about hope, support, and learning who to trust with vulnerable truths about their health. Content warning: This podcast features sensitive subject matter such as mental health, bullying, religion, suicide, and confronting mortality. The views expressed in this podcast do not necessarily reflect the views of the Immune Deficiency Foundation, its employees, sponsors, or Board of Trustees. Listener discretion is advised.…
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20ChronicxTwenties%201.1-1.pdf In this 2-part pilot episode, two members of the Immune Deficiency Foundation’s youth advisory committee -- Cassie Mummert and Victoria Medl – discuss mental health coping strategies, spirituality, and the complications and joys of dating other people with rare diseases. Content warning: This podcast features sensitive subject matter such as mental health, bullying, religion, suicide, and confronting mortality. The views expressed in this podcast do not necessarily reflect the views of the Immune Deficiency Foundation, its employees, sponsors, or Board of Trustees. Listener discretion is advised.…
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20BC%2002.02%20Susanna%20Raj.pdf Susanna Raj joins Dr. Nicole to discuss the harrowing story of her childhood immigration from India to receive CGD treatment in the United States and Canada. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. Read Susanna's story: https://primaryimmune.org/resources/news-articles/determined-keep-moving-forward…
Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%202.2%20Transcription.pdf Immune Deficiency Foundation staff members Alissa Creamer and Megan Messick join Dr. Nicole to discuss the inclusions efforts that went into planning the blockbuster 2024 PI conference. Dr. Nicole's conference session (The Elephant in the Exam Room): https://youtu.be/kn7gM7hsGA8…
Season 2 premiere. Dr. Nicole Rochester discusses social determinants of health, as well as ideas for creating more equitable living conditions for optimal public health. Follow Dr. Rochester on LinkedIn: https://www.linkedin.com/in/nicole-rochester-md To learn more about primary immunodeficiency, to donate, or to volunteer, visit https://primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.…
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…
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.
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…
**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.…
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.
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.…
Drs. Nicole Rochester and Vivian Hernandez-Trujillo discuss disparities in PI, language barriers, rebuilding trust, and the importance of meeting communities where they are. TRANSCRIPT: https://primaryimmune.org/files/transcription-ep-4-bcpdf Find Dr. Hernandez-Trujillo on LinkedIn: https://www.linkedin.com/in/vivian-hernandez-trujillo-608207a/ Find Dr. Rochester on LinkedIn: www.linkedin.com/in/nicole-rochester-m-d-40700812 The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.…
Dr. Jay Bhatt, Deloitte's Managing Director Center for Health Solutions and Health Equity Institute, joins Dr. Rochester to discuss the business and economic case for investing in health equity. "US health care can’t afford health inequities": https://www2.deloitte.com/za/en/insights/industry/health-care/economic-cost-of-health-disparities.html Transcript: https://primaryimmune.org/files/transcript-bold-conversations-dr-jay-bhattpdf Find Dr. Bhatt on LinkedIn: https://www.linkedin.com/in/dr-jay-bhatt/ Find Dr. Rochester on LinkedIn: www.linkedin.com/in/nicole-rochester-m-d-40700812 The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.…
Academy Award-nominated writer and producer Emily V. Gordon joins Tracy Shaw during the 2023 PI Conference to discuss vulnerability, storytelling, limits, and working in Hollywood with a primary immunodeficiency. Transcript: https://primaryimmune.org/files/transcript-fireside-chat-with-emily-v-gordonpdf…
The saga of popular Twitch personality Ironmouse's life reads much like the anime stories from which she finds inspiration: A talented young woman’s dreams are smashed by illness and circumstance, yet she, in her innate desire to provide for those she loves while making the world a friendlier, sillier, and more musical place, creates a path of her own to unimaginable success. Transcript: https://primaryimmune.org/sites/default/files/Undiagnosed%20Ironmouse%20transcript.pdf The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. Your support of IDF helps ensure people like Ironmouse get the support they deserve. Donate here: https://primaryimmune.org/idf-online-donation twitch.tv/ironmouse…
Popular YouTube and Twitch personality CDawgVA talks about his history growing up in Wales, moving to Japan to pursue voice acting, and how meeting his friend Ironmouse led him to raise money for IDF. Transcript: https://primaryimmune.org/sites/default/files/Connor%20Podcast%20Transcript.pdf Your support of IDF helps make programs like this possible. To donate, volunteer, or learn more, visit primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.…
Dr. Lauren Sanchez delivers a talk on the complicated and emotional process of SCID and PI patients transitioning from pediatric to adult care. Transcript: https://primaryimmune.org/files/edittranscript-transition-carepdf To view the video of this presentation on YouTube, click here: https://www.youtube.com/watch?v=aKl7tZJiiZc Click here to view a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Sanchez%20Transition%20of%20Care%205-31-23%20FINAL.pdf IDF Transition Guide: https://primaryimmune.org/publication/patients-and-families/immune-deficiency-foundation-guide-young-adults Your support of IDF helps make programs like this possible. To donate, volunteer, or learn more, visit primaryimmune.org/donate. 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/TRANSCRIPT%20--%20Undiagnosed%20Episode%202.pdf A cut on the roof of your mouth. A step in a shallow puddle during a game of backyard football. Potting soil beneath your fingernails. Occurrences like these are, at worst, minor inconveniences for most of the world. However, they can lead to weeks or months of agony for some. This reality is made even harsher for someone who finds profound joy in the simplicity of growing flowers from tilled earth. Someone like Shane – who has to take extreme caution when performing the most calming of hobbies. Before being diagnosed with chronic granulomatosis disease, or CGD, Shane suffered intense, frequent infections that left him hospitalized for weeks at a time, and with a reluctant dependence on opioids. This is his story. Undiagnosed is an Immune Deficiency Foundation production. Your support of IDF helps to ensure that people like Shane get the resources, education, and community support they need to live healthier, happier lives. To learn more about PI, to volunteer, or to donate, visit primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.…
Dr. Stacey Clardy (Associate Professor of Neurology at the University of Utah, Salt Lake City VHA) answers questions from the PI community about her clinical study: Neurological Manifestations of CVID. For a transcript of this podcast, click here: https://primaryimmune.org/sites/default/files/FINAL%20-%20Neuro%20pod%20Q%26A%20transcript.pdf Dr. Clardy's paper on neurological symptoms in CVID: https://nn.neurology.org/content/10/3/e200088 The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.…
Dr. Sherita Golden (Vice President and Chief Diversity Officer, Professor at Johns Hopkins Medicine) joins Dr. Rochester to discuss the roots of medical mistrust among Communities of Color – from historical examples such as the Tuskegee Syphilis Study to contemporary and personal examples that marginalized individuals understand all too well. For a transcript of this episode, click here: https://primaryimmune.org/sites/default/files/Bold%20Conversations%20episode%202%20transcript.pdf Study on confidence in the U.S. healthcare system: https://www.ihi.org/about/news/Documents/IHIPressRelease_ABIMFPilots_March2023.pdf Find Dr. Golden on LinkedIn: https://www.linkedin.com/in/sherita-golden-4388a9202 Find Dr. Rochester on LinkedIn: https://www.linkedin.com/in/nicole-rochester-m-d-40700812 The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.…
Series premiere. On average, it takes nine to fifteen years of untreated illness to be diagnosed with and treated for a Primary Immunodeficiency. Recent studies estimate that 70 - 90% of those with PI do not yet have a diagnosis. You’re listening to Undiagnosed – an Immune Deficiency Foundation podcast. These are the true stories of the harrowing journey to diagnosis. Imagine an energetic young girl. As the oldest of four children under the age of five, she’s the caretaker of her siblings. She’s a bit of a teacher’s pet, and has an inquisitive mind. She does well in school despite being constantly on the move as the daughter of a Naval officer. She’s the type of child who goes ice skating in the winter and eats carrots straight from the garden. You’d likely never assume that a debilitating illness would alter every aspect of that young girl’s life – because that illness is invisible to everyone but her. For that energetic young girl, much of the story of her life would be colored by missed opportunities for proper care… by a complex web of unrelated but entangled health issues that pointed to a larger problem no one would understand for more than six decades. That young girl is Sandy. This journey is hers. Your support of IDF helps to ensure that people like Sandy get the advocacy, education, and community support they deserve. To donate, volunteer, or learn more about primary immunodeficiency, visit www.primaryimmune.org. The views and opinions expressed are not necessarily those of IDF, its donors, employees, or Board of Trustees. Follow IDF on social media: YouTube: https://www.youtube.com/channel/UC-e7Jua_piexR70CVoaofYw Facebook: https://www.facebook.com/ImmuneDeficiencyFoundation/ Twitter: https://twitter.com/IDFCommunity Instagram: https://www.instagram.com/idfcommunity/?hl=en…
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