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NanN

Updated 9mo ago

Looking for someone with similar rare diseases

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?

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Shirlee

2y

Hi, are all your conditions related in some way?
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NanN

2y

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.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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