Kartagener Syndrome Member Introductions

I have Kartagener’s syndrome and I am wondering if anyone out there has turricephaly as part of the package? Thanks.

I am the mother of a 5 year old little girl with PCD and situs inversus totalis. We are very blessed because she has had relative good health. We are very aggressive with her treatment. We hope and pray this will make a difference in the long run.

i have two children with pcd and it effects them both very differently am intrested in talking to people who know what im talking about! also whats this vest everyone going on about??

I am a 39 year old male living with Kartagener Syndrome. I have had this condition since birth and its nice to know that I am not the only one suffering from this!

Hi, Everyone—

I’m Laurel, 53, with PCD/SI (Kartagener’s syndrome). I also have an older sister with it.

For those looking for the most up=to=date info on PCD and Kartagener’s, go to www.pcdfoundation.org/
It is a non-profit foundation for those with PCD and parents of those with PCD, founded and run by a woman with a grown daughter with PCD, and she is in frequent contact with the PCD researchers at UNC, Chapel Hill, so she gets all the latest info, right from the experts. It’s not exactly a chat room or forum, though, and these groups are SO helpful for us.

For anyone who may not already know it, all those of us with Kartagener’s are, in future, going to be said to have PCD with Situs Inversus—the Thoracic Surgeons who are in charge of stuff like this decided this at their annual national meeting last year. It makes sense, since we really DO have the same disease syndrome as those with “PCD” only— the only difference is the reversed organs. And that’s basically a crap shoot, which of us get those and which don’t, because it’s about 50% with SI and 50% without.

Laurel (53, PCD/SI, still hanging in there)

I’m an 18-year old diagnosed with PCD. Would like to learn more about this disease.

Hi, I’m a 37 year old man and live in the center of Mexico,I was diagnosed 10 years ago with PCD, KS, dextrocardia and Situs Inversus. I was diagnosed when I was 27 years old because I have been very healthy, and at that time I got pneumonia and for the first time of my life an X ray was taken on me. I married and had trouble when we wanted to get pregnant, so we discovered I was infertile because of this condition. I adopted a couple of kids, and we are a very happy family. I try to do a normal life and only become extremely careful during cold weather because I can suffer getting strong flu’s. I have to cough every time a lie on my back, so I try to do it at least twice a day. I get pneumococcal vaccine every year in October. My sinus and ears are fine, I don’t suffer from them. Finally I look younger that what I am… If I can help anyone with my experience feel free to ask.

I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat :confused: