Has anyone been diagnosed with Cystic Fibrosis?

[Purple_Heather]

I was dx with bronchiectasis approx 4 years ago and just recently I was told I have CF. Just wondering if anyone else has this since I know it's unusual to develop it as an adult. Thank you!

[ZepFan1]

When I was diagnosed with Bronchiectasis I was told it was an adult form of CF, so I guess you have got CF but as you’re an adult it’s correct diagnosis is Bronchiectasis.... not sure if that helps lol

[cofdrop-UK in reply to ZepFan1]

It may be that you have cf. However generally it does not mean if you are diagnosed with cf as an adult the correct diagnosis is bronchiectasis.

True bronchiectasis plays a huge part in cf but the two conditions, although they have similarities are different. People with cf can often have problems with their pancreas and people with PCD can have additional problems.

Easy conclusion to come to though.

Love cx

[medway-lady]

Sort of I have Cylindrical Brochectasis and was told that I have the CF gene but its turned off. I have had it since birth many years ago but it was only discovered as I had a series of chest infections which were awful and I was referred to a Respiratory Consultant who was interested in CF. I have a relative with CF so wasn't surprised really.

[cofdrop-UK]

HI Purple-Heather.

I usually post on BLF but pop in occasionally.

CF does not ‘develop’ as an adult - it is genetic, along with PCD and as such will have gone undetected since birth. Bronchiectasis is a huge part of these conditions but it can be caused by an insult to the body i.e. in my own case double pneumonia and whooping cough as a baby, many years ago.

My consultant has tested a patient aged 60 and one aged 80 who had been diagnosed and treated for bronchiectasis and they were both positive for cf.

There is a positive in that you will have access to some medications that people with PCD and bronchiectasis cannot have.

If it were me my only concern would be to check out any offspring.

Please make sure you have a good consultant who has a special interest in cf, usually found in one of the cf centres in large cities.

Wishing you well,

Love cx

[Purple_Heather in reply to cofdrop-UK]

Thank you for your comments on my question about CF. I understand that it is a genetic disorder and I am now under the care of a CF specialist at the centre for CF in Toronto, Canada (where I live) so I believe that I am in good hands. I have had pancreatitis in the past with no explanation (now it makes sense). I'm comforted to know that people in their 60s and 80s have been dx with CF late in life (I'm 53) since I worry about my life span. What is PCD?

[cofdrop-UK in reply to Purple_Heather]

So pleased you are getting the great support from your cf team.

I have put up a link for you which explains PCD. My respiratory teams have a special interest in cf, pcd and bronchiectasis.

pcdsupport.org.uk

Stay safe

Love cx

[MMog]

Hello, yes, I was diagnosed with bronchiectasis several years ago, and last year diagnosed with cystic fibrosis.

[Purple_Heather in reply to MMog]

How have you been able to manage it? I'm still in shock finding this out at 53.

[MMog]

I was just 50 when I found out. The consultant was fairly reassuring, saying nowadays this is something you die with, rather than from. They are treating me well, and I feel much better than I did a year ago. I could say it has been a positive.

[Purple_Heather in reply to MMog]

Thanks for sharing. That’s good to hear.