Undiagnosed Episode 1: "The Caretaker" by The IDF Podcast published on 2023-03-01T17:42:28Z 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 Genre Science Comment by Cathy 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. 2023-05-02T18:21:29Z