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NanN

691d

Yara_75 I saw that you posted about Situs Inversus, and I was so excited to respond, but when I tried to access the post, it said the link was broken. Please contact me. I have Kartagener's Syndrome (Situs inversus totalis, chronic bronchiectasis, and chronic sinusitis) as well as Primary Ciliary Dyskinesia with a rare component that includes aquaductal stenosis leading to hydrocephalus. Years later I developed chronic kidney disease (stage 3), chronic pancreatitis, and pancreatic insufficiency, with elevatedliver enzymes from time to time. Please get ahold of me so we can link up. The combination of stuff I have is super rare, but I know of only 1 other person who has all of it. Could you be the 2nd?

    • NanN

      691d

      They are supposed to be. I've been to the Mayo Clinic in Rochester, Minnesota and up to that point they hadn't seen anyone with all of the components. It's been a lot of suffering I'll admit, but if there is anyone who can benefit from what I have done to help minimize my degree of symptoms, I'd love to offer any help I can.

    • Shirlee

      691d

      Hi, are all your conditions related in some way?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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