Many people living with primary immunodeficiency rely on injectable medical therapies such as immunoglobulin replacement therapy, or Ig, to maintain healthy lives. Receiving these infusions can be frightening to those who are afraid of needles, and can challenge anyone who has to receive multiple needle pricks. Beyond needle pain, people with PI may also be living with chronic pain, causing issues such as arthritis, inflammation, or muscle aches. Pain management is crucial and necessary to help those suffering from acute or chronic pain. We discuss pain management further with Dr. Amy Baxter, the CEO and Founder of Pain Care Labs and the inventor of the physiological pain blocker product, Buzzy. Buzzy and other Pain Care Labs products can be found on www.paincarelabs.com or www.amazon.com.

Pain Management: From Infusions To Everyday Life

Wiskott-Aldrich Syndrome or WAS is a unique form of primary immunodeficiency. WAS primarily affects males because it’s an X-linked recessive condition and is characterized by abnormal bleeding and eczema of the skin. 

To discuss WAS further, we will be talking with our guest, Sumathi Iyengar, the Executive Director of the Wiskott-Aldrich Foundation. Dr. Iyengar is a pediatrician-turned-advocate for WAS after her son was diagnosed at a young age. She is a partner and longtime friend of IDF.

Wiskott-Aldrich Syndrome (WAS) - A Diagnosis-Specific Episode

Are you interested in learning more about clinical research trials that are available for you? In today’s episode, we will be discussing important information about clinical trials with Jason Bradt, MD, Ali Smyth, Ph.D., and Elizabeth(Buffy)Garabedian, RN, MSLS. This session was originally presented during IDF’s Rare of the Rare Summit in October.

Clinical Research Trials & You

For those living with rare diseases, such as PI, it is important to have a strong voice in state government and advise policymakers on critical issues related to access, coverage, and the diseases themselves. Many state policymakers are unaware of the challenges the rare disease community faces. To help bridge these gaps in knowledge, Rare Disease Advisory Councils or RDACs are created. RDACs serve as an advising body and liaison between the rare disease community and state governments. With us today to discuss their work with RDACs in their state is a panel of IDF advocates: Jessica Goddard and Rachel Goddard from South Carolina, and Marian Furst from Utah.

IDF Advocate Connections: Becoming A Rare Disease Advisory Council Member

Being diagnosed with a rare disease like PI can be intimidating, as well as confusing. Hear from panelists, Nicole Rochester, MD, Mary Hintermeyer, APNP, and Brian Rath, JD as they review some important questions and information that you should use when discussing your diagnosis concerns with your healthcare provider. This session was originally presented as an IDF Forum.

What To Ask Your Healthcare Provider

M. Elizabeth M. Younger, CRNP, PhD, Assistant Professor of Pediatrics at Johns Hopkins University School of Medicine joined us at a recent IDF forum to discuss immunoglobulin replacement therapy and the various ways it can be tweaked to fit each patient's unique needs.

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 view the slideshow used in the presentation, click here: https://primaryimmune.org/sites/default/files/4-For%20Website-IDF%20Forum-Ig%20Therapy-FINAL-5.19.22.pdf

Thank you to Takeda, CSL Behring, Grifols, and Accredo for sponsoring this event.

Immunoglobulin Replacement Therapy: As Individual As You with Dr. M. Elizabeth M. Younger

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.

Navigating Access to Quality Care with Primary Immunodeficiency

Dr. John W. Seymour, PhD, LMFT (Professor Emeritus and Distinguished Faculty Scholar at Minnesota State University, Mankato)discusses the links between mental and physical health, and how individuals with PI can best care for minds.

Click here to view a PDF of the presentation: https://primaryimmune.org/sites/default/files/2022%20PI%20Conference-Connection%20Physical%20Mental%20Health-Seymour.pdf

Ask IDF: http://www.primaryimmune.org/askidf

Donate or volunteer: https://primaryimmune.org/waystogive

The Connection Between Mental and Physical Health

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

Community Q&A: Gastrointestinal Issues and Primary Immunodeficiency

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

Undiagnosed Episode 1: "The Caretaker"

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.

Bold Conversations Part 2: The roots of medical mistrust among Communities of Color

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.

Community Q&A: Primary Immunodeficiency & Neurological Issues with Dr. Stacey Clardy

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.

Undiagnosed Episode 2: "The Gardener"

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.

Transitioning from pediatric to adult care with Dr. Lauren Sanchez

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.

CDawgVA talks history, career, and philanthropy

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

Undiagnosed (ft. Ironmouse): "The Performer"

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

Fireside chat with Emily V. Gordon

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.

Bold Conversations Part 3: The business case for health equity

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 4: Health disparities in PI with Dr. Vivian Hernandez-Trujillo

Immune Deficiency Foundation CEO Jorey Berry provides an update for October 2023.

October 2023 CEO update with Jorey Berry

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

Health disparities in primary immunodeficiency with Dionne Stalling

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.

Undiagnosed (feat. The Autism Dad): Father and Son

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.

ADA-SCID Gene Therapy  Update with Dr. Don Kohn

**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.

Young adult roundtable: college, mental health, and PI.

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

Undiagnosed (feat. Dr. Kelley Hagerich): Two Different Traumas

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.

The Student: Darcy Gott and the risk of experience

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

Ask the expert: PI and fatigue

Hemophagocytic lymphohistiocytosis (HLH) is a severe systemic inflammatory syndrome that can be fatal.  HLH occurs when histiocytes and lymphocytes become overactive and attack the body rather than just bacteria and viruses. Join the Immune Deficiency Foundation as we sit down with Dr. Michael B. Jordan, from Cincinnati Children’s HLH Center of Excellence, to discuss the identification and management of HLH. To learn more about inheritance and PI, visit the IDF website: https://primaryimmune.org/about-primary-immunodeficiencies-diagnosis-information/inheritance. To learn more about HLH, how to diagnosis HLH, research and more, please visit: https://www.cincinnatichildrens.org/service/h/hlh.

Hemophagocytic lymphohistiocytosis (HLH) - A Diagnosis Specific Episode

Common Variable Immune Deficiency, or CVID, is just one of the more than 400 primary immunodeficiencies, characterized by low levels of serum immunoglobulins and loss of antibodies, which causes an increased susceptibility to infection. While it is considered “common” compared to other immune deficiencies, questions still remain about the diagnosis, treatment, and well-being for people living with CVID. In this podcast episode, we will be discussing the symptoms, treatments, and health management associated with CVID with our guest, Dr. Charlotte Cunningham-Rundles.

Common Variable Immune Deficiency (CVID) - A Diagnosis-Specific Episode

People living with a primary immunodeficiency, or PI are missing key parts of their immune system that help fight infections. Some types of PI leave people unable to make antibodies of their own. Many individuals living with PI rely on immunoglobulin replacement therapy (or Ig) to provide the antibodies that we don’t make on our own. Those antibodies are necessary to fight off bacteria and viruses. These replacement antibodies come from human plasma. This plasma is collected from volunteers and is used to make Ig and other plasma-derived therapies that are necessary to the survival of many living with PI as well as other rare diseases. We will be discussing the importance of plasma with Amy Efantis, the President & CEO of the Plasma Protein Therapeutics Association or PPTA, an organization representing more than 850 human plasma collection centers in North America and Europe.

All About Plasma

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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