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:
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"

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

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.

Bold Conversations: Social determinants of health

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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