Immune Deficiency Foundation

Latest Episodes:

Bold Conversations Part 4: Health disparities in PI with Dr. Vivian Hernandez-Trujillo Oct 02, 2023

Show notes

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.

Bold Conversations Part 3: The business case for health equity Aug 23, 2023

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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.

Fireside chat with Emily V. Gordon Aug 17, 2023

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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

Undiagnosed (ft. Ironmouse): "The Performer" Aug 04, 2023

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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

CDawgVA talks history, career, and philanthropy Jun 20, 2023

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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.

Transitioning from pediatric to adult care with Dr. Lauren Sanchez Jun 05, 2023

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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.

Undiagnosed Episode 2: "The Gardener" May 01, 2023

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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.

Community Q&A: Primary Immunodeficiency & Neurological Issues with Dr. Stacey Clardy Apr 19, 2023

Show notes

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.

Bold Conversations Part 2: The roots of medical mistrust among Communities of Color Apr 04, 2023

Show notes

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.

Undiagnosed Episode 1: "The Caretaker" Mar 06, 2023

Show notes

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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