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.
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. So here I will be talking about my past, present, and future, living with this odd disease and not only help someone else with KS/PCD but anyone living with a chronic illness.
