Thank you for sharing your experience. Mine mirrors yours in so many ways. A caretaker since childhood that lead to nursing school. Pushing through it all with  multiple pneumonia diagnosis, ear and sinus infections, GI issues, Herpes and yeast infections,etc. I was diagnosed with CVID first and had started IVIG when I was diagnosed at age 64 with breast cancer. This was my second cancer and  4 months after treatment for breast CA was diagnosed with kidney cancer. i had nursed 10 immediate family members within 12 years who all died of multiple cancers at young ages. With this history i was genetically tested and was diagnosed with ATM. Finally the puzzle was completed at age 66. Now i receive IVIG via a port every 3 weeks which has helped immensely. I also can now receive preventative  cancer screening giving me the best p[ossible life at age 73. The IDF has been a wonderful resource and definitely lets this zebra know I am not alone.

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:
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Undiagnosed Episode 1: "The Caretaker"

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.

ChronicXTwenties: Heartbreakingly beautiful (Part 2)

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.

Q&A: Antibody Deficiencies with Dr. Luke Wall

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20GI%20Connection.pdf

View a PDF of this presentation: https://primaryimmune.org/sites/default/files/Transcript%20-%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.

Decoding PI: Unraveling the GI Connection

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.

Q&A: Protecting yourself against COVID, flu, and RSV

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

Undiagnosed Episode 1: "The Caretaker"

The IDF Podcast

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