Join a Community That Understands You

Get answers from those who share your health journey

Left Image 1Middle Image 1Right Image 1
avatar

NanN

Updated 1y ago

Living with Kartagener's Syndrome: Seeking Support

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.

Can you help? Connect today

avatar

Peach_Tea

2y

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!
avatar

LlolaLlama

2y

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.
avatar

LlolaLlama

2y

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!
avatar

NanN

1y

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.

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.

feed-footer-0

Free unlimited access

to all community content

feed-footer-1

Find others who are

medically similar to you

feed-footer-2

Pose questions and join

meaningful discussions

pp-logo

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

appStoreBtngooglePlayBtn

© 2020-2024 Alike, Inc