Undiagnosed Episode 1: "The Caretaker"
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- Опубликовано: 24 ноя 2024
- 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.
The views and opinions expressed are not necessarily those of IDF, its donors, employees, or Board of Trustees.
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.
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I LOVE this new series!!! Thank you so much!! Looking forward to more!!
I also went undiagnosed for 5 decades, doctors routinely prescribing antibiotics time after time for constant sinus infections & one bout of pneumonia. I did get diagnosed after allergy shots did not work. My result was well below testing parameters. Praise anyone donating plasma-you are my heroes and heroines.
Thank you for sharing your story! I am one of four in my family with CVID. I wasn't diagnosed until July 2017. I too lived sixty one years before I was diagnosed. A sibling was diagnosed first and helped me on my journey to get diagnosed.
You are just like me! Thank you I enjoyed this so much. I look forward to more Undiagnosed 🦓❤️
Same here, went 62 years my primary care doctor way back said, "doctors are going to tell you that there is something wrong with your immune system but don't let them, its slow but it kicks in eventually". I was 13 and he was retiring. I loved my Doc but boy do I regret listening to him. My life has been one life threatening health condition to another.
We're so sorry to hear that. Hopefully you've found the care you need and deserve to stay happy and healthy.
It took 61 years for me too. Too much damage to live my golden years with any energy or enthusiasm.
My wife has a primary immunodeficiency that wreaked havoc on her life. She was diagnosed via an undiagnosed disease network genetic test at age 36. After several more years the figured out how to stop the nonstop inflammation that was overwhelming her brain at the NIH. She came close to death several times before that from unexplained persistent inflammation.
We're sorry to hear that the journey has been so difficult. We hope she's doing well and getting the treatment she needs. ❤
Is this video supposed to be completely blank? Not seeing any video at all, just sound track. Very interesting but awkward to and hard to follow without video.
Hi there! We're glad you enjoy it, and sorry for the confusion. This is part of our audio-only podcast program "Undiagnosed", which is primarily released to platforms like Spotify and Apple Podcasts kind of like talk radio. We've put it here with the podcast art as the visual component so folks who don't usually listen to podcasts have access to it as well.