Primary Ciliary Dyskinesia with Bronchiectasis?

[Lau25]

Hey guys

Does anyone on here also have Primary Ciliary Dyskinesia (PCD)?

I am 26 and was diagnosed with bronchiectasis last December. I constantly have bronchitis and laryngitis (I have already had bronchitis 5 times and laryngitis 4 times this year alone) and am worried that these constant infections will just make my lungs worse. My ENT thought that it is possible that I have PCD, but does not want to pursue testing as it is incredibly expensive and he said that as there is no cure for PCD there is not much point in paying so much for a diagnosis. I just wish I knew why I was always sick though.

If anyone else on her has PCD, or suspected PCD, I'd really love to chat to you about whether you felt pursuing a diagnosis was worthwhile.

[cofdrop-UK]

II appreciate your treatment would be the same as if your bronchiectasis was from another cause but feel your ENT person is not seeing the full picture. I would have thought it essential that you know if you have PCD as it is genetic and has other implications. I wonder do you have situs inversus.

It is s very important that you are under the care of a respirator consultant who has a special interest in cf/ncfbronchiectasis.

There is a PCD group on HU but there is also a PCD Famly Support Group - they were partners in the ERS Patient Priorities - Bronchiectasis, which I had the good fortune to be involved with as one of the Patient Advisory Group, although I have now sadly given this up due to ill health.

europeanlunginfo.org/bronch...

As with everything re bronchiectasis you will have to be your own advocate and push to be tested. I know folks who are being tested at present. Go for it.

cx