... I have a son with situs inversus totalis & Kartageners. He is now 7. With maintenace he is doing pretty good. He has a brother that is 4 that had no visible sysmptoms until now. He is going in to get his tonsils removed and will have the scope done at that time. I would say it is worth doing the scope while they are young, it is worse for the parent than it is for the... (1 replies)
... I was diagnosed as having Kartageners Syndrome with Situs Inversus Totalis. ... (35 replies)
... I've been diagnosed for about 26 years. It's only been that past five however that I've been able to learn a lot about it. Another name for Kartageners is primary ciliary dyskinesia with situs inversus. This is one I find researchers using the most. ... (35 replies)
... I have never heard of Kartageners Syndrome or even of PCD before. ... (35 replies)
... Hi Odeya,
It's nice to e-meet you. I'm a 35 year old female with Kartageners(KS). From what I understand with the male fertilty is that it's not that they are infertile(unless for another reason), it's that the sperm are bad swimmers because of the cilia.
In the states there is a Foundation. It's at www.pcdfoundation.org . There are links there to a research site, a... (35 replies)
... (35 replies)
... I was born with kartageners syndrome with situs invertus and primary cilia dyskinesia. ... (1 replies)
... Hi ... my partner has Kartageners Syndrome since birth, he had a colapsed lung at birth and it all followed from there. ... (0 replies)
... Hi everyone, I'm Ell.
I am 36, with KS. I had the middle lobe of my left lung removed when I was a toddler. After that, things got better and I played trumpet for 10 years, volleyball for 4, hiked across the Sinai, blah blah blah. VERY healthy for a KS patient.
I had a failed pregnancy when I was in my 20's and an easy, successful pregnancy 6 years ago, both without... (0 replies)
... Hi, my name is Mindy and I have a 4 month old who has been diagnosed with situs inversus totalis and possibly Kartagener's. After a sample from his nose was taken we were told that the cilia were not moving. Now they want to proceed with a bronchioscope and take a sample of those cilia. I also have a 4 year old son that does not have situs inversus, but the cilia in his nose... (1 replies)
... DS has pseudomonas (he has cystic fibrosis) and he was put on a nebulized antibiotic called tobi (tobrymycin) I wasn't aware they treated pseudamonas a with iv antibiotics, just nebulized ones which you do after regular albueterol nebs and cpt. (35 replies)
... Hi Linnie
My name is ( removed - please read and follow the posting rules ) I have KS and I have been taking too many Iv antibiotics cause I was found a really complicated bug called Pseudomonas Aeuroginosa. Next week I will have a test to see if I have Bronquioeectasia.
Please anyone having this syndrome contact me via e-mail (35 replies)
I have just joined this group.
I wonder if I could ask for some advice?
I am a 39 year old UK male with Kartageners Syndrome,
which includes amongst many other things chronic asthma
and bronchiectasis. I have regular chest infections. (6 replies)
... Hi Christina,
Wondering if you still read here. How is your nephew doing? I hope is infections have settled down. I had tons of ear issues as a child. My sinuses seemed to be more gradual.
Hope to hear from you!
Lynn :wave: (35 replies)
... Hi Christina,
I was mostly saying hello and that it's wonderful that you are doing research to help your nephew.
KS is a subset of primary ciliary dyskinesia(PCD). KS is simply PCD with reversed organs(situs inversus). You may find much more information by looking up PCD. Reseachers use that term much more frequently. Although when I meet new docs I say all the terms... (35 replies)
... Hi. This is really weird. I have never posted on any board. I realize most of these postings were old so I hope someone responds.
I am 36, I have Kartaganer's Syndrome. I was diagnosed when I was a toddler. I have never met or even heard of anyone else who has it. Most doctors know almost nothing about it. Once I had a doctor whose roommate in college did a paper on... (35 replies)
Hi there!! Sorry to hear you're experiencing all these problems. I was glad to read you are seeing a pulmonologist. When you've been sick every couple months was your other doc doing sputum cultures or just prescribing meds?
Just asking because it sounds like you weren't getting the right antibiotic for whatever you were growing in there or maybe not being... (35 replies)
... That will give you tons of info as well as looking up Kartageners Syndrome. KS is PCD with reversed organs. A good resource is the PCD Foundation. www.pcdfoundation.org . ... (35 replies)
... I just happened to start reading this thread and became very interested. I am a 32 yr old single mom and have been having alot of trouble with my health in the past 3 years or so. I keep getting re-occuring "bronchitis", typically every 2-3 months Im on another antibiotic. For me anything under 500 mg doesnt work. My asthma has been getting worse and worse. It used to be... (35 replies)
... Lynn -
Hi, my name is Christina. I just recently found out that my 4 year old nephew has Kartagener's. It is quite scary because we are trying to learn about what to expect. He is currently taking antibiotics through a pick-line for an ongoing sinus and ear infection. It would be wonderful to be able to visit with someone who could spread some light.
Hope to hear from... (35 replies)