Edac and asthma

[Chip_y2kuk]

Diagnosed Excessive dynamic airway collapse today...ah well.... they tell me I probably do have asthma too... but its milder than we thought

[madonbrew]

I’m sorry to hear this! I’ve never heard of edac but I really hope they can do something to help you?! And milder asthma than thought is hopefully a bonus…in the scheme of your other diagnosis.

Take care and I hope you get lots of support from your team!

[Hidden in reply to madonbrew]

Strictly speaking, it’s a form of tracheomalacia (TM), or ‘floppy airways’ as it was described to me when Bod was first diagnosed as a newborn. Specifically, where TM is global collapse of the trachea due to a cartilaginous abnormality, EDAC is where only the posterior wall collapses. The end result is the same in terms of effect/symptoms, just a slightly different mechanism. It can be difficult to tell the two apart, so EDAC and TM as terms (or TBM, tracheobronchomalacia, if other airways are also involved in addition to the trachea) are sometimes used interchangeably, even though there is a difference in pathology. As with TBM, we think it can be congenital or acquired, possibly as a result of chronic coughing, and we know it’s probably under diagnosed. Recent estimates suggest that about 30% of chronic respiratory patients may have some degree of TBM/EDAC, but whilst it can be very problematic for some, it doesn’t cause obvious problems for everyone. It does generally mean that airway clearance is far less effective, though, so those with it tend to be more prone to infections, and particularly if they also have an underlying condition that increases the likelihood of that to begin with: TBM was the primary reason the child spent 6 months of her first year in hospital on IVs, and a big factor in her rapid lung function decline and why she’s always been much harder to manage than most kids with cf.

[Alberta56 in reply to Hidden]

Thank you Charlie for that well informed answer. xxx

[Chip_y2kuk in reply to Hidden]

Floppy airways is how they described it to me in my case the back wall of of trachea folds in as I breathe out.... while not life threatening it does cause clearance issues and the reason I keep getting chest infections

[Alberta56]

I hope now you've got a diagnosis, they can gige you a suitable management plan. Bst wishes.

[Chip_y2kuk in reply to Alberta56]

It appears chest physio and a nebuliser of Hypertonic saline is the go to solution

As at the moment its under diagnosed and little researched

[Alberta56 in reply to Chip_y2kuk]

So many lung conditions are under researched. I get newsletters from the British Heart Foundation and I'm rather envious of their activity and the research they fund.

[Shrimpy-13-22-25]

I too have EDAC, for 5 years now, also asthma and bronchiectasis. It didn’t bother me for ages, but as my other problems have worsened, it’s getting harder to clear my lungs because of EDAC which results in infection, particularly pseudomonas. As I have become resistant to all other antibiotics for the pseudomonas, I may now managed to have 3 months of the nebulised antibiotic Bramitob, which is a 28 day, on/off course. CPAP seems to be the only treatment available at present. I’m glad to hear that your asthma is mild and hope that your EDAC doesn’t bother you. Best Wishes

[Chip_y2kuk in reply to Shrimpy-13-22-25]

I keep getting chest infections which is one of the things that made the doctor think I may have this issue .... after the ct scan and xray it appears he was right

But no I don't do badly with breathing I do badly with clearing and cough so hard sometimes I nearly pass out

[MoyB]

I hope they keep a close eye on you and an even closer eye on the research and developments for future treatment.Best wishes, xx Moy

[Chip_y2kuk in reply to MoyB]

Waiting for some test for Hypertonic saline (apparently some don't do well on it)

The doctor I'm seeing is trying to get the aussies to find some research into CPAP because there is some evidence it may be useful in keeping the airways open (because of the pressure) however the NHS doesn't prescribe these for that condition because there's little to no research that they help it (ive googled and there's little research on edac/tbm and even less on cpap and how it helps them)

Quite frightening in this day and age how we can have such little knowledge on these sorts of things

[MoyB in reply to Chip_y2kuk]

Yes, that's why I said I hope they'll keep a close eye on any new research and developments. I had to look the condition up when I first read your post and was astonished that there was so little helpful info out there at the moment.

It's great that your doctor is taking steps to try and get something that might help you. I do hope something can be done to relieve the condition for you. CPAP sounds like a possibility to me (as a lay person) xx Moy