NanN

222d

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.

Chronic Sinusitis

Anomalies of respiratory system

Chronic Kidney Disease (CKD)

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  • Peach_Tea

    197d

    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!

  • LlolaLlama

    51d

    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.

  • LlolaLlama

    51d

    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!

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