This is Kartagener’s

My journey as a working artist navigating the challenges of Kartagener's Syndrome while embracing a life towards simplicity without losing my creativity.

This is MY story of living with a rare disease I was born with called Kartagener’s Syndrome and PCD. I am not a medical professional. Every post (unless noted) is from me, a patient’s perspective, and my life experiences. I am writing this, well, because it’s time. After 50 years of waiting for someone else to document their life experiences, what they did, and maybe to learn why others survived and others sadly didn’t I got fed up. And decided to do it myself. I created this site February 2024. I will be talking about my past, present, and future, living with this rare disease and not only helping someone else with KS/PCD but anyone living with a progressive chronic illness.

Lynne Talbot-Taylor Lynne Talbot-Taylor

Challenge Accepted

Hospital stays can be more frequent than I'd like, but I try, no matter how I feel, to make the most of them by engaging with everyone involved in my care—from the nurses to the food service, even the folks cleaning my room.

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Any medical information, research info, and stories from others I find will be actively updated on another site.

I welcome any thoughts, ideas, experiences, or even corrections.

I will never share messages sent to me. They will remain private unless we have discussed incorporating them into this site.

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View fullsize My brain's "survival mode" to keep me calm was to whip out my phone and take pics like I was on a road trip. Little did I know I would be in the ICU, having surgery and getting discharged 3 weeks later. #raredisease #cilia #PCDawareness #
View fullsize Can you imagine living with all of these lung diseases because you were born with a rare condition involving Cilia? Most cannot imagine it. I know because I hear people complain about having a basic cold. Try having that cold for the rest of your li
View fullsize A snippet from a book of poems I am writing based on artwork created with my x-rays back in 2017. . . . . . . #bornthisway #kartagenersyndrome #kartagener #PCD #poetry #poemoftheday #chapbook #primaryciliarydyskinesia #heyinstagram #chronicillnessa
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View fullsize . I’m sharing what it’s like to live with Kartagener’s Syndrome and Primary Ciliary Dyskinesia in terms of Mucus. . Yes the Mucous coughed up from a woman’s point of view and how it’s brought shame to me while being a y
View fullsize . One of the panels from my x-ray installation. Out of all the panels, this one was meant to be a bit darker and very fragmented. . This one is “broken reflection” and hard to really see it as it was intended. The panels are transparent a
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“If I cannot find a dedicated account from a patient’s perspective of living with this disease, then why don’t I just do it myself?”

— Me

Animated image is from my own x-rays that I turned into acrylic art panels.
©Lynne Talbot-Taylor ©Kartageners.com ©ThisIsKartageners.com
Do not Reproduce.