When I was first diagnosed with Bronchiectasis, and I did my research on what exactly it was, everywhere I looked online said it was a rare disease. Only 1 in every 1000 people in the UK suffered with it.
But. These last few weeks and months, it seems to be appearing more and more? Is it really as rare as the websites tell us, or, bearing in mind their information is usually a year or two old, is it just being diagnosed better?
Are more people actually being confirmed to have Bronchiectasis, than, say, having it labelled as bog-standard COPD, or mis-diagnosed altogether as Asthma or something else by their doctors?
Has anyone else noticed a rise in folk announcing they have Bronchiectasis?
Written by
Symes
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As a rule more women suffer from it SO think the say is rare for guy to suffer it
I'd call it uncommon rather than rare. 2 or 3 people in every thousand have it. I think diagnosis is increasing as doctors are much more aware of it now. About time too. It isn't as easy to diagnose as, say, copd, as the only firm diagnosis is by CT scan. Also it has so many causes, and is idiopathic in about half of cases.
This is a really interesting question Symes. As you say non cystic fibrosis bronchiectasis is often decribed as a rare disease. It is even listed as one on the genome project.
I do agree with Hanne in describing it as uncommon rather than rare. There is now a very welcome interest in ncfbe, in particular we are excited about the 50million euros (eu) money which is for trials for inhaled antibiotics for cf and ncfbe specifically. There are a team of very proactive european medics involved in this. There is also massive interest in all things 'lung related' within the European Respiratory Society, and both Hanne and I play a small part as patient reps with regard to ncfbe.
So is the increase in the profile of people with bronchiectasis down to an increase in bronchiectasis itself or recognition due to better understanding and willingness by those in primary care to ask for ct scans and be open to the possibility of ncfbe.
Not to sure that many doctors in primary care are that up to speed, from both my own experience and that of other people with ncfbe. It seems it is still a condion which is either not diagnosed or misdiagnosed as another respiratory condition.
I am sure we all hope that the brilliant work done by the likes of Dr. James Chalmers and his colleagues and ERS will eventually enlighten those in primary care and indeed some in secondary care, allied workers and patients themselves.
So whether it be considered rare or not, at least now we know there are very highly regarded specialist doctors now doing their best for us.
Have to take my hat off to the consultant who said before the high res CT scan was done that she was pretty sure that I had bronchiectasis. She said it was hearing my cough while I was in the waiting room. She was right and has been really kind and supportive ever since. I have not seen her for a couple of years but can phone her secretary for an appointment if I feel the need. However, GP practice is excellent so have not asked for an appointment with her.
It still amazes me how the first paediatrician in my city diagnosed me as a baby in 1948 with bronchiectasis. I imagine having whooping cough and double pneumonia must have alerted him, or maybe it was more prevelant in those days. It all raises more qustions than in answers. No ct scans then. Could be they had rigid scopes! Might ask cons their opinion one of these days.
So here's to a better future for people living with this condition.
Ive just been diagnosed. Had Asthma as a child. Then repetitive Bronchitis, pneumonia. Now this. I havent even read on it yet. I was also diagnosed as pre diabetic at same time. I'll be grateful for any information, tips, or pointing me in the right direction please. Bta. <3
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