does anyone have a condition called tracheobronchomalacia and do they have access to treatment outcomes and is their any research out their

[laslynda]

hi, my name is LasLynda I have asthma and a rare lung condition which I've been in hospital recently called Tracheobronchomalacia. I wonder if any of you have been diagnosed with this condition and any research or treatment for this thank you

[mrsmummy]

Hello and welcome to the forum. I have never heard of your condition so had to look it up. This may help:

rarediseases.info.nih.gov/d...

[Badbessie]

theasthmacenter.org/index.p...

[Badbessie]

ncbi.nlm.nih.gov/pmc/articl...

[Badbessie]

google.co.uk/url?sa=t&sourc...

[Northern-soul]

Hi,

I also have this condition. There are a small number of us on this site with same diagnosis. My condition initially was just involving the trachea but a recent bronchoscopy has shown that the condition has progressed to now involve both bronchi.

I have been using a CPAP machine both during the night and intermittently during the day for the past three years. The machine forces air through the airway which acts as a pneumatic stent. Following my deteriorating I have now been told that I need surgery. This is not straightforward, major surgery and currently only available in USA in adults, although there are plans underway to change this soon.

There are a couple of sites that you can visit to learn more CureTBM and a Facebook site called Tracheobronchomalacia Facebook open site where you can get more info.

If you wish any further information from me please feel free to pm me,

NS

[Hidden]

I also have Tbm -

[wheezy01]

Hi I also have this condition. I’m 21 and was diagnosed 2 years ago at 19. I have it in my trachea and larger airways. There is no treatment currently that I know of in the uk currently apart from cpap. I don’t use cpap yet due to my age, although we expect I may only manage another year before needing it.

[ONYM in reply to wheezy01]

Hi wheezy01. I was diagnosed with tracheomalacia earlier this year too at the age of 28 and was also told they were reluctant to try me on CPAP due to my age. I've been struggling a lot lately so think it might be the next step for me too. Would be interested to hear about how else you adapt life around it and of course would be happy to chat further if helpful to you. Hope you're doing as okay as possible at this time of year.

[Hidden]

Hi Laslynda,

I have just been diagnosed with severe tracheobronchmalacia after nearly 2 years of investigations. Just wondering how you are going on if you are having any treatment? I have a constant cough which is made worse by many things i.e. polution/perfumes/aerosols etc and struggle to walk far due to breathlessness. Im awaiting some saline nebulisers to help clear secretions. I am finding it extremely hard to come to terms with this diagnosis and the effect this condition has had on my life. Any one out there can they give me some idea what to expect as things progress?

[ONYM in reply to Hidden]

Hi nicknak1. Completely recognise the symptoms you describe and have really struggled to get my head around the massive impact tracheomalacia seems to have on life. I'm 28 and was diagnosed earlier this year with laryngeal tracheomalacia. I was started on the saline pari-pep nebuliser back in April/May but was recently taken off it as my airway wasn't able to tolerate it (kept getting irritated and made my symptoms work). I have heard this saline treatment can really help clear secretions for a lot of people though so I really hope it works for you! I'm struggling at the moment and don't currently have any relief. The next step for me would be CPAP but they're quite reluctant to put me on this due to my age. I've been in and out of hospital lately so have a feeling it might be happening sooner rather than later.

I'm still early days with this diagnosis but have been searching for others out there in the same boat as it just seems quite isolating. More than happy to chat over DM or whatever suits. Hope you're as well as possible at the moment.