Podcasts about primary immunodeficiency

What if every milestone your child was supposed to reach came with countless curve balls? For Alexis Kaplan, motherhood quickly turned into a journey of advocacy, strength, and unwavering love as she navigated her daughter Gabby's complex and rare health conditions. In this moving episode, Alexis shares:  ✅ The moment her newborn was rushed to the NICU with a collapsed lung  ✅ How her daughter's recurring infections led to a diagnosis of immunodeficiency and collagenous gastritis ✅ The emotional toll—and strength—of being the medical historian and advocate for a medically complex child ✅ How weekly infusions, therapy, and figure skating are helping her daughter thrive ✅ Her advice for parents facing rare, chronic, or undiagnosed conditions This is a must-listen for anyone caring for a child with complex medical needs, healthcare providers who want to better understand the family perspective, and parents looking for inspiration and connection. Timestamps & Key Topics ⏱️ [00:00] – Meet Alexis Kaplan Mother of two, former PR pro, and fierce advocate for her daughter Gabby ⏱️ [03:00] – From a Healthy Start to a Medical Emergency Gabby is born with a spontaneous pneumothorax and was immediately taken to the NICU ⏱️ [08:00] – Life After NICU The strange silence in the hospital room and the emotional weight of an unexpected start ⏱️ [10:00] – Feeding Struggles and Early Signs Something Was Wrong Eczema, weight loss, food intolerance—and a mother's instinct in full force ⏱️ [14:00] – The Fevers Begin Raging fevers, unrelenting illness, and a trip to the ER that revealed double pneumonia and RSV ⏱️ [19:00] – ENT Visits, Hearing Loss, and the Power of Child Life From audiology tests to the first Barbie from a Child Life Specialist—how support changed their hospital experience ⏱️ [22:00] – Asthma, Immunology & The First “Red Flag” Gabby's pulmonologist recommends deeper testing, leading to a pivotal moment in her diagnosis journey ⏱️ [24:00] – Periodic Fever Syndrome & Tonsillectomy A working diagnosis leads to aggressive treatment—but symptoms persist ⏱️ [26:00] – Gastroenterology, Scopes & the Search for Answers A rare diagnosis: collagenous gastritis—so rare, the doctor had never seen it before ⏱️ [29:00] – The Diagnosis That Changed Everything Immunoglobulin deficiency is confirmed, leading to weekly subcutaneous infusions at home ⏱️ [31:00] – A Grey's Anatomy Ritual & Finding Control Gabby takes charge of her infusions, watches Grey's Anatomy, and finds a routine in the chaos ⏱️ [32:00] – Advocating for the Right Medication Alexis does her own research and fights for biologic treatment to manage Gabby's symptoms ⏱️ [34:00] – Reflecting on Strength, Resilience & Motherhood The mental toll of advocating, comforting, and never giving up—and watching her daughter skate through it all ⏱️ [36:00] – TikTok Tips & Empowerment in the Hospital Line Gabby empowers other kids at the clinic with simple strategies to get through shots and IVs ⏱️ [37:00] – Final Reflections: Curveballs, Advocacy & Support How Facebook groups, therapy, and the power of asking questions help Alexis keep going   Resources & Links

Dionne Stalling, founder of Rare and Black, discusses her decades-long journey to PI diagnosis with Dr. Rochester.

Dr. Siobhan Burns is a Professor of Translational Immunology at University College London. Her group studies the underlying molecular and cellular mechanisms that give rise to primary immunodeficiency disorders. She talks about how genetic mutations affect immune function, and what inborn errors of immunity can teach us about general immunology.

5/10/2023 Award-Winning actress Violet Tinnirello (www.violettinnirello) joined Mike and cohost, actress Daire McLeod on ConversationsRadio Ep.143. Violet is 'Charlie' one of the cast members on Sesame Street - airing on HBO MAX. As a lifelong fan of all Jim Henson's work, it was a dream come true when Violet was cast to play the first child cast member on Sesame Street in nearly 20 years. The 2022 Young Entertainer Award (Best Actress in a recurring role -TV) was given to Violet for her work on Sesame Street. She began her performance career at the age of four and has appeared in many commercials including Lunchables, Red Lobster, Stop & Shop, Holiday Inn, Nickelodeon, Lego, NBC's America's Got Talent and HAPPY! - the book and videos by Pharrell Williams. She voices the characters "Cappie" on Nick Jr's Wallykazam and "Penny" in the Nickelodeon short, The Thing About Babies. Violet has appeared in short films including A Force for Good, which is about the universal power of compassion. She appears on Cyberchase on PBS as Alex and has been seen on Saturday Night Live multiple times (with Kristin Stewart, John Mullaney, Saoirse Ronan and more). Violet loves to perform on the live stage. Throughout the Broadway labs, workshops, and even the run at the iconic Paper Mill Playhouse in Millburn, New Jersey, Violet spent over two years working on Chasing Rainbows: The Road to Oz. She loved playing the role of Shirley Temple and showcasing her tap-dancing skills - her favorite dance style. She also sang and danced in the cabaret style shows both at The Laurie Beechman Theater and Stage 72 at The Triad. In a tribute to Broadway's return, Violet joined a cast of Broadway kids in “We're Gonna Come Back”, directed by Janine Molinari. In the spring of 2020, Violet was cast in a new made-for-TV-movie by Almost Never Films, directed by Danny Roth. Violet and the company traveled to Oklahoma where A Country Romance became the first live action production to film in North America since the pandemic halted production. Violet also appeared as Charlie in “The Power of We: A Sesame Street Special” released on PBS and HBO Max in 2020. Violet can be seen in the upcoming season of "What We Do in the Shadows" on Hulu and FX. Violet Tinnirello is a supporter of the Jeffrey Modell Foundation! JMF is a global nonprofit dedicated to early diagnosis, treatments, and ultimately, future cures for Primary Immunodeficiency through awareness, advocacy, and research. Learn more about the foundation ar https://info4pi.org/ Follow Violet on Instagram @violettinnirello Enjoy the Podcast!

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.

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

Dr. M. Elizabeth M. Younger of Johns Hopkins University School of Medicine joins IDF's Lynn Albizo and Stephanie Steele to discuss issues surrounding the use of Skilled Nursing Facilities for patients with Primary Immunodeficiency. Ask IDF: http://primaryimmune.org/askidf The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

Sarah C. Glover DO (Professor of Medicine, University of Mississippi) answers community questions about the relationships between gastrointestinal issues and primary immunodeficiency. To view the video of Dr. Glover's full presentation, click here: https://www.youtube.com/watch?v=62Ns3X-Ry6Y Scholarly article: Clinical Presentations, Diagnostic Considerations, and Therapeutic Options for Gastrointestinal Manifestations of Common Variable Immune Deficiency -- https://journals.lww.com/ajg/Abstract/2022/11000/An_Expert_Opinion_Approach__Clinical.14.aspx

IDF's own Colleen Brock (RN, Manager of Medical Programs) and Stephanie Steele (Director of Payor Relations and Policy) give a presentation on making sure you, as an individual with PI, have the tools you need to get the care you deserve. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

In this episode, Abbie Cornett will be talking about the issues geriatric primary immunodeficiency patients face when accessing care.Support the show

JACI: In Practice Deputy Editor, Robert Zeiger, describes the March 2022 issue, the theme of which is “Respiratory Infections and the Lung.” Theme topics covered include COVID-19 Infections and Asthma, Long-Term Respiratory Consequences of Early-Life Respiratory Viral Infections, Rhinovirus Infections and Their Roles in Asthma, and Respiratory Infections in Patients with Primary Immunodeficiency. Dr. Zeiger then presents the Highlights of the Original Articles in the issue, which are on the topics of Respiratory Infections, Asthma, Drug Allergy, Insect Sting Allergy, and Rhinitis. Read the issue: https://bit.ly/JAIPMarch2022. Access JACI: In Practice's entire library: https://www.jaci-inpractice.org.  

Looking for Herpes antiviral support options? There are more choices than antiviral prescriptions. Let's review some. Who Am I? I have a disorder of the Immune System called Primary Immunodeficiency. I've struggled with Herpes, Shingles, Epstein Barr (it's a member of the HSV family too) for 5 decades. Treatment for the immune deficiency (CVID) began in 2016 and has helped greatly but I still manage my HSV daily. I am a Clinical Nutritionist – not a Nutritionist or Dietician – in practice since 1985. We work similarly to naturopaths. More information...

Articles mentioned in this episode: https://www.nbcnews.com/health/health-news/fda-clears-astrazenecas-covid-antibody-treatment-immunocompromised-rcna8130https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19-update-fda-authorizes-new-long-acting-monoclonal-antibodies-pre-exposurehttps://www.fda.gov/media/154704/downloadhttps://pubmed.ncbi.nlm.nih.gov/34843105/

Nicholas L. Rider, DO, FAAAAI, discusses the new AAAAI course designed to help clinicians better recognize and diagnose primary immunodeficiency. This free online course offers Part IV MOC and continuing education credit.

One of IDF's many great initiatives, IDF Walk for Primary Immunodeficiency, unites all members of the PI community to help create better lives for those living with these rare, chronic disorders. You can register for an IDF Walk for PI in your area as a participant or as part of a team. Many teams are created for the walks and are led by enthusiastic Team Captains! With us to discuss being a team captain is Rachel Novak, the team captain of Team Cats Peeps.

In this episode, we talk about a couple of resources that Colin and Jodi use to practice gratitude, and we want to ensure we link over to those for anyone interested. We do not get anything in return for promoting these, but we wanted to ensure you had the links. Colin - 5 Minute Journal (https://www.intelligentchange.com) They also have an amazing newsletter that is free and has some great resources and articles. Jodi: Daylio Mood Tracker (https://daylio.net) And for those who may not be aware of what doom scrolling is, here is the definition. Doomscrolling and doomsurfing are new terms referring to the tendency to continue to surf or scroll through bad news, even though that news is saddening, disheartening, or depressing. Many people are finding themselves reading continuously bad news about COVID-19 without the ability to stop or step back. (https://www.merriam-webster.com/words-at-play/doomsurfing-doomscrolling-words-were-watching) 

Just when it looked like there was a light at the end of the tunnel with the COVID-19 pandemic, Public Officials started to roll back mask mandates and other protections. Now the Delta variant is causing positive cases to increase and prolonging our hope for normalcy. Jodi Taub, LCSW, rejoins Colin and Lisa to discuss the anxiety and stress those in the PI community continue to live with during the pandemic. She also provides some ways to help us deal with the ever-changing environment around us.

Jodi Taub, LCSW, is a psychotherapist with over 20 years of experience, and she is a member of the Primary Immunodeficiency community. She specializes in treating issues related to mood and anxiety disorders, and the emotional issues that arise from coping with chronic illness and disease. Jodi talks with Colin and Lisa, co-Founders at ImmuneCompetence.org about living with primary immunodeficiency, the importance of mental health and how COVID-19 is amplifying all everything. You can find Jodi online at www.joditaubtherapy.com or on Instagram @chronicillnesstherapist.

In the studio this week are Drs Ailie, Stacey, Anu and Shane who discuss what's been in the news:NASA Ingenuity inaugural two (and planned) flights on Mars, and SpaceX Crew-2, prediction and intensity of earthquakes, and paper retraction and research biases.Today's First Guest (online) is Dr Emily Edwards from Monash University who talks and about primary immunodeficiency (PI) and PI week.Today's Second Guest/Presenter (online) is Graci Finco from UNT who talks about dinosaur's sounds, movement and paleoartists.Remember, “Science is everywhere”, including:Program page: Einstein-A-Go-GoFacebook page: Einstein-A-Go-GoTwitter: Einstein-A-Go-Goand live every Sunday at 11:00a.m AEST on RRR 102.7mHz FM.

Have you ever met someone who, in order to receive a life-saving treatment, had to appeal to one of the highest elected officials in the United States? I have, and her story is inspiring, but all too indicative of the state of healthcare around the world. This week, we welcome Chronic Jen to the program, as she shares this harrowing tale of advocacy, as well as her journey with Primary Immunodeficiency and Postural Orthostatic Tachycardia Syndrome.You won't want to miss when she lets us know the #1 must-have item she brings with her to every ER visit and doctor's appointment. It's something I hadn't even thought to do before talking with her, and will change how I approach meeting new physicians forever.So listen along as we talk about Jen's holistic approach to her chronic illnesses, debate which of the Seven Dwarfs has PI, and explore the intricacies of her Monday night infusion routine.All that, and so much more, on this week's The Chronic Illness Playbook!For more information on plasma donations, please visit https://www.donatingplasma.org/ To hear more from Chronic Jen...@ChronicJen on Instagram: https://www.instagram.com/chronicjen/ Chronic Jen's Blog: https://chronicjen.com/ To hear more from Joe and The Chronic Illness Playbook podcast...Instagram: https://www.instagram.com/chronicillnessplaybook  Support the show (https://www.buymeacoffee.com/CIPB)

HOW TO COPE DURING COVID-19: THE JOURNEY OF A PSYCHOTHERAPIST WITH PRIMARY IMMUNODEFICIENCY“GIVE YOURSELF PERMISSION TO COPE HOWEVER YOU WANT TO COPE…NO JUDGMENT NECESSARY” – JODI TAUB Jodi Taub is a psychotherapist with a private practice in NYC. She is a specialist in chronic illness and is a chronic illness warrior herself. Her first episode on Invisible Not Broken was called “The Emotional side of chronic illness” (Jan, 2019).In today’s episode, we dive into Jodi’s personal and professional journey as a very high-risk patient with Primary Immunodeficiency.We talk about coping – both internally and externally - during this acutely difficult time in history, and we cover a number of related thoughts like fear, gratitude, judgment, life-risk, behavior change, trauma, and more.Emotions are running high, everyone. But we can get through and we can do so together (even when we cant physically be together).Stay safe. Stay home. Stay well.(Trigger warning: we talk about PSTD, loss, trauma, war, etc.)➡️ VISIT HTTPS://WWW.JODITAUBTHERAPY.COM@JODITAUBTHERAPY (ON FACEBOOK)Eva’s personal coping tactics:My coping: Being in control of what you can· ROUTINE (Stretching and “body-feels” Special coffee; Review “schedule”) for Wellacopia, podcast, chores, workouts· TAKING WALKS! Avoiding Cabin fever and being present (but safe) outside· Makeup and dressing - even if no one sees me! Makes me feel good.· Being in touch with the reality to an extent – read the news every day, talk to my friends about how they're feeling· Projects I have been putting off (organizing a photo album)· Meditation· Writing in my journal· Games with friends (via Zoom)· Staying fit (live and recorded online videos)· Cooking experimentation (made a vegan gluten free lasagna!)· Conscious time with my husband - #1 coping strategy. Very grateful for his support.· Watching “Friends” again. Always makes me happy!· PODCASTS! “Practicing human with Cory Muscara”, “Happier with Gretchen Rubin”,· Funny things: “coronials”, toilet paper memes, quarentinis· ZOOM PARTIES!· Gratitude journaling: toilet paper, comfy clothes, HEALTH HEALTH HEALTH despite being in more pain, parentsPLEASE SHARE

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John Boyle was diagnosed with X-linked agammaglobulinemia (XLA) in 1978, when he was just six months old. On today’s episode, John and I talk about the routine management of his condition that allows him to live with minimal symptoms, and how taking care of his health was instilled in him at an early age. We also talk about his work with the Immune Deficiency Foundation, and why, after years of being attuned to his physical health, he realized it was time to give some attention to his mental health, too.  Learn more about John and check out the show notes here. Follow Made Visible on Instagram. We want to learn more about you! Tell us about you and what got you listening to Made Visible here. 

“Give yourself permission to cope however you want to cope…no judgment necessary” – Jodi Taub Jodi Taub is a psychotherapist with a private practice in NYC. She is a specialist in chronic illness and is a chronic illness warrior herself. Her first episode on Invisible Not Broken was called “The Emotional side of chronic illness” (Jan, 2019).In today’s episode we dive into Jodi’s personal and professional journey as a very high-risk patient with Primary Immunodeficiency.We talk about coping – both internally and externally - during this acutely difficult time in history, and we cover a number of related thoughts like fear, gratitude, judgement, life-risk, behavior change, trauma, and more.Emotions are running high, everyone. But we can get through and we can do so together (even when we cant physically be together).Stay safe. Stay home. Stay well.(Trigger warning: we talk about PSTD, loss, trauma, war, etc.)➡️ VISIT HTTPS://WWW.JODITAUBTHERAPY.COM@JODITAUBTHERAPY (ON FACEBOOK)Eva’s personal coping tactics:My coping: Being in control of what you can· ROUTINE (Stretching and “body-feels” Special coffee; Review “schedule”) for Wellacopia, podcast, chores, workouts· TAKING WALKS! Avoiding Cabin fever and being present (but safe) outside· Makeup and dressing - even if no one sees me! Makes me feel good.· Being in touch with the reality to an extent – read the news every day, talk to my friends about how they're feeling· Projects I have been putting off (organizing a photo album)· Meditation· Writing in my journal· Games with friends (via Zoom)· Staying fit (live and recorded online videos)· Cooking experimentation (made a vegan gluten free lasagna!)· Conscious time with my husband - #1 coping strategy. Very grateful for his support.· Watching “Friends” again. Always makes me happy!· PODCASTS! “Practicing human with Cory Muscara”, “Happier with Gretchen Rubin”,· Funny things: “coronials”, toilet paper memes, quarentinis· ZOOM PARTIES!· Gratitude journaling: toilet paper, comfy clothes, HEALTH HEALTH HEALTH despite being in more pain, parents ➡️ visit https://www.joditaubtherapy.com@joditaubtherapy (on Facebook) SHARE

This is a special edition in English regarding covid-19, from the podcast Så Sjukt - – a pod about life with primary immunodeficiency. A longer version of this episode is available in Swedish. The podcast is produced by the Swedish patient organization for people with primary immunodeficiency (PIO). The progression of the new coronavirus, covid-19, around the world affects everyone, but may especially worry those living with a chronic disease. How should people with primary immune deficiency relate to the infection? Does immunoglobulin treatment in any way protect you? And how will this outbreak affect access to healthcare and medicines in the near future? With the help of Professor Lennart Hammarström from the Karolinska Institute we highlight and discuss some of the questions that have been submitted to PIO in this highly topical episode from Wednesday, March 18, 2020. For more information on covid-19, visit folkhalsomyndighet.se and pio.nu. The podcast ”Så Sjukt” is a collaborative project between PIO and CSL Behring.

In this episode Dr. Catherine Bollard, Blood Associate Editor provides highlights of this commissioned review series Understanding and Treating Primary Immunodeficiency, that highlights cutting-edge developments in the biology and management of primary immune deficiencies.

Tune in this week as we discuss how Elizabeth Gray conquers life while living with Endometriosis and Primary Immunodeficiency. Not just one, but two chronic illnesses, while still keeping a positive outlook and living her best life.   Elizabeth is a published model and actress who loves anything with chocolate. A mental health advocate who shares her experiences with primary immunodeficiency and endometriosis. She enjoys spending time with her husband Andrew as well as her friends and family, cooking, and watching anything nerdy.   Elizabeth can be found on social media as @LizabethMarie and talking about life with chronic illness @Alittlesparkleandfrizz    Visit this link for more information on Endometriosis Visit this link for more information on Primary Immunodeficiency   Don't forget to sign up for our Free, 5 Day, Conquer Your Chaos Challenge at m.me/chaosqueenspodcast

Primary immunodeficiency diseases (PI) are a group of more than 350 rare, chronic disorders in which part of the body's immune system is missing or functions improperly. There are approximately 250,000 people who are diagnosed with PI in the United States. People with PI can face frequent health problems and often develop serious and debilitating illnesses. Years ago, a diagnosis of a PI meant extremely compromised lives, not just for the patients but for their families as well. Today, with early diagnosis and appropriate therapies, many patients diagnosed with a PI can live healthy, productive lives. Listen as John Boyle, President and CEO of the Immune Deficiency Foundation (IDF), tells his story and describes the work of IDF. Founded in 1980, IDF is the national nonprofit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with PI through advocacy, education and research.

When Jeffrey Modell continually begged his parents to “do something” about his Primary Immunodeficiency, it broke their hearts. But Vicki said that she and her husband, Fred, saw their son’s words as an “impassioned plea.” In 1987, one year after Jeffrey’s death, the Modells founded a foundation in their son’s name. Since that time, the Jeffrey Modell Foundation has established a network of more than 800 expert physicians serving nearly 300 cities in 86 countries, spanning six continents. Indeed, the Modells have “done something.” The Modells story is the subject of a documentary being released on June 11 through all digital and video on demand platforms. Titled “Do Something: The Jeffrey Modell Story,” the movie was produced by some of the same people behind ESPN’s popular “30 for 30” films. During their conversation with “World of Promise” host Anthony Farina, the Modells talk about the film, the time they spent with Jeffrey, the work being done by the Jeffrey Modell Foundation, and they share advice for parents who may be going through similar circumstances with their children. 

After running a 5K, Blake and Kyle talk with Nick and Alex Lavin founders of the Yellow Bear Foundation. The guys discuss the Zombie Run, the basis of the foundation and future events. The Yellow Bear Foundation is a not-for-profit organization empowering communities to spread awareness and fund research of Primary Immunodeficiency. You can visit the Yellow Bear at yellowbearfoundation.org

Colin and Lisa, the Founders of Immune Competence, sit down and talk about their journeys with Primary Immunodeficiency, as well as best practices they have picked up to become successful patients. Lisa and Colin discuss why they started Immune Competence, and why everyone should go to a National Conference with the Immune Deficiency Foundation. The conversation jumps around to the Olympics, must have sick items, and yeah even an idea for a PI Singles dating website.

In this episode Dr. Smith speaks with Dr. Sandra Lin, Associate Professor at Johns Hopkins University. They will be discussing the article Primary Immunodeficiency and Recalcitrant Chronic Sinusitis: A Systematic Review. Read the article in International Forum of Allergy and Rhinology Listen and subscribe for free on Apple Podcasts, Google Play Music and Subscribe on Android

Focus on child and adolescent health, featuring an author interview on safer bone marrow transplants for children.