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NanN

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Is there anyone else out there who has Kartagener's Syndrome? This is Situs Inversus Totalis, Chronic lung and sinus disease (due to immotile cilia or Primary Ciliary Dyskinesia), Hydrocephalus via Aquaductal Stenosis, and in later stages Chronic Pancreatitis, and Chronic kidney disease. It is a rare Syndrome.

Top reply
    • NanN

      395d

      @LlolaLlama oh wow!! I know of 1 other person who has Kartagener's Syndrome, and they are very young. Yes, the distinguishing component between PCD and Kartagener's Syndrome is the situs inversus totalis. It's miraculous that you were able to have a baby. That's great! Usually with PCD the males are sterile, and the females are at high risk for tubal pregnancies. So you have lung and sinus disease like me? Do you have issues with your kidneys and pancreas? The ciliary dysfunction causes problems with kidney filtration, and pancreatitis/pancreatic insufficiency. I have to take enzymes when I eat, so that anything will digest properly. I would imagine that like cystic fibrosis PCD comes in variable severity. I feel extremely blessed to be doing as well as I am. I'd love to chat with you sometime. I need to check back here more often than I do.

    • LlolaLlama

      557d

      Whoa this was a long time ago, it's rare I find someone else that has heard of PCD, or Kartagener's so I had to comment!

      • NanN

        395d

        @LlolaLlama oh wow!! I know of 1 other person who has Kartagener's Syndrome, and they are very young. Yes, the distinguishing component between PCD and Kartagener's Syndrome is the situs inversus totalis. It's miraculous that you were able to have a baby. That's great! Usually with PCD the males are sterile, and the females are at high risk for tubal pregnancies. So you have lung and sinus disease like me? Do you have issues with your kidneys and pancreas? The ciliary dysfunction causes problems with kidney filtration, and pancreatitis/pancreatic insufficiency. I have to take enzymes when I eat, so that anything will digest properly. I would imagine that like cystic fibrosis PCD comes in variable severity. I feel extremely blessed to be doing as well as I am. I'd love to chat with you sometime. I need to check back here more often than I do.

    • LlolaLlama

      557d

      I have PCD but all my organs are in the right place. However, when I was pregnant I had to go to a genetic specialist and have a ultrasound where they can check on the child's organs, see if they're where they're supposed to be , that way if possible to get an early diagnosis since any child I have automatically inherits one of my defective genes. Luckily my daughter is healthy. If I have any other kids I have to always get that ultrasound.

    • Peach_Tea

      703d

      I don’t have that but may have ciliary issues, based on some DNA results and my clinical history, hoping to get further testing at some point!

☝ 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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