Anyone got it? Looks like Im gonna be tested for it probably. Interestingly one of the syndromes I have involves ciliary motility... hence my deafness. Has anyone been tested for it? I havent a clue how they do it, but cant imagine it involves anything nice lol
Lynda
Thanks Lynda for the link and info,
I have said on another of your posts, not sure if that's next in line for me. Be interesting to see any replies and experiences of others here. Will have a look for previous posts.
I don't have it and know nothing about it, but if you can't find anything on here I think the British Lung Foundation has a forum which might yield something for both of you? I've not used it but as it covers all lung disorders (and probably related ones that people may have like sinusitis) I imagine you might have a better chance of coming across someone with experience of this.
Crossed fingers - not sure whether to say hope neither of you has it, if it would explain things for you and can be treated!
I know what you mean - I really dont want it, but I also want an explanation for this mess, so....
Lynda 
Hi,
I guess about 50% of the time PCD goes along with what was historically called Kartenger's Syndrome. KS is related to heart defects, but mostly to your heart being placed on the rt. instead of the left, or other internal organs being on the opposite side. Or some version of situs inversus.
Usually the organs work just fine, just a bit more interesting kind of body that's all :). Now they think that the dysfunction of the cillia while you're growing as a fetus causes the organs to be placed differently.
Anyways, I know all of this because I have a rt. sided aortic arch (wrong side), and also abherant renal arteries. So since I have all the breathing problems looked into getting tested for PCD, because it wasn't the craziest idea ever! Also I used to work with a pediatric infectious disease doc. who also thought this wasn't the craziest idea ever.
Anyways, the researcher I spoke to went over all my records, and felt I have bad asthma/sinus issues that are more ""normal"" and a congenital trachea/esophagus problem, which is enough to deal with! It was helpful though, because I got some expert advise for free, and only had to send the research site my records. If they felt I was at risk, they would have taken a sample of my nasal hairs, and tested them in a certain way, and it would have been free (plus travel) because of the research component).
So...lets see. I don't know how you go about this in the U.K., but in the U.S. there are centers that can save you a lot of time getting diagnosed. Most of the centers also treat adults with cystic fibrosis, as the two diseases have some of the same treatments. In the U.S. two major centers are Chapel Hill, and National Institute of Health (NIH) in Washington, D.C. I spoke to both, but the one at NIH was the one who helped me out, and for some reason I think the Dr. or his assistant is from the U.K.
LOL. Anyways, I hope this helps. Feel free to use what you can and leave the rest!
Bee
Oh, and Laurie Edwards has a really nice blog and book called ""A Life Disrupted"" on her journey to getting diagnosed with PCD in her late 20s after living with it since birth.
This is really interesting as I've felt my daughter has this, and have done for a while.
She is 4yrs old, has had serious chest problems since 6mths old. She mimics CF and even the consultants scratch their heads!! She has had 2 sweat tests and a DNA test for CF and all are negative but she continues to cough up daily. She has daily physio and nebs and is on maintenance pred. All this and she continues to get repeated infections, the last being quite serious. She has bronchial wall thickening now too :-((
I don't know whether its been one of the tests the resp team have done or not. Could this be diagnosed via bronchoscopy or ct?? She's had both. How do I go about it??
I have continuous sinus problems. My other daughter suffers with sinus and headaches so its all kinda in the family.
As others have said, just to get an answer for all of this and be able to name it will, I'm sure, make it easier to handle. So far it remains she has 'severe brittle asthma' and 'adrenal insufficiency. But I still want to know why!!!!!
Hi Emily - sounds like a test which may be well worth asking for given her history. Are you in the UK? There are only three centres in the UK which can test for PCD - Leicester Royal Infirmary, Southampton General and the Royal Brompton. It cannot be diagnosed by any other method than their test which involves taking a sample of cells from the nasal passage with a tiny brush. You can be referred by a respiratory consultant or I think by your GP. Early diagnosis can make a big difference in the long term.
Hope that helps
Lynda
Lynda,
Thank you so much for your reply. That's a huge help. Maddie has been referred to Professor Bush at the RBH. I need to call her resp team tomorrow anyway so will mention the pcd while I'm on the phone.
Thanks so much x
So glad you feel you are headed in the right direction! I have some rare conditions myself, and sometimes it feels like searching for a needle in a haystack, but worth it in the end, I found. One thing I was going to add is that PCD can lead to bronchiectasis if it isn't treated in a timely matter, and that's something they can test for on a lung CT scan. Basically multiple respiratory infections can cause permanent damage to airways.
But in a way the really good thing about PCD (I hear) is if you go to the right place, they take that little sample, and know exactly how to test it the right way. So hopefully you will get some answers or at least more information on how best to care for your daughter...
Bee
So i am a male who has been diagnosed with Primary Ciliary Dyskinesia (PCD) and i had intercourse with a female, is it possible she could be pregnant? Even though men who suffer from Primary Ciliary Dyskinesia have infertility, do all patients with Primary Ciliary Dyskinesia suffer from infertility or just some? Because im very concerned she is pregnant. Please help! I would very much appreciate it
Yes it is possible unless you used contraceptives. There are better places to get help than here... Hopefully it's a conversation you are having with her too!
She is on birth control and i pulled out, what do you think the chance of her being pregnant are? I am still under 18 and it was horrible choice i/we made and i wish i could take it back but i cant. Im just scared she could be pregnant, what can i do? /:
Both go to a GUM (STD) clinic and get tested, pregnancy isn't your only concern if you're having unprotected sex. And learn from it...
I dont have any STDs... That's not my concern..
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