... I was born with kartageners syndrome with situs invertus and primary cilia dyskinesia. ... (1 replies)
... I was diagnosed as having Kartageners Syndrome with Situs Inversus Totalis. ... (35 replies)
... I have never heard of Kartageners Syndrome or even of PCD before. ... (35 replies)
... (35 replies)
... 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 would like to know what some of your childhood experiances with this syndrome were so that I can go to my doctors a little better informed. I feel a little overwhelmed right now with this news. ... (1 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)
... 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)
... 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 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)
... Hi Butterfly!!
How cool that you wrote a paper on us backwards, cilia defective folks:) At birth my situs inversus was discovered. You would think that once the rest of the symptoms began it would have been easy to diagnose. The reversed organs combined with respitory, sinus etc is pretty much a dead give away. Unfortunately for me my peds doc also had situs inversus but... (35 replies)
... I am shocked! I did a report on Kartagener's syndrome, just 'cause I thought it was cool (especially the dextrocardia part) but I didn't think it was common enough to have more than one person with it on this board!!! Welcome!! I'm sorry that you have to go through all the pain that's associated with your condition. If I may ask, how was it first discovered in you? (35 replies)
... I'm mildly amused because I just saw a stack of paper on Kartagener's syndrome stapled to the bulletin board in the respiratory therapists' lounge. ... (35 replies)
My name is Lynn. I'm 34 with Kartagener's syndrome(KS). KS is a subset of PCD(primary ciliary dyskinesia). PCD is an inherited cilia disorder. My cilia do not work properly to clear secretions causing chronic lung, ear & sinus infections. When you have PCD with reversed organs it's called KS. I have Dextrocardia with complete situs inversus.
I have mild... (35 replies)
... Hi ... my partner has Kartageners Syndrome since birth, he had a colapsed lung at birth and it all followed from there. He had the sweat tests completed to ensure it wasnt CF but thankfully it wasnt. ... (0 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)
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 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)