Hi, I have just been diagnosed with TBM and find very few people have even heard of it. Is there anyone else out there with this condition?

TBM stands for tracheobronchomalacia - too long to use in a message!

[sassy59]

I have not heard of TBM but Pete does have trachea malacia where his throat collapses and he blacks out for a matter of seconds. It is scary to watch and Pete says he can hear me but feels he has no control over anything. I will look up TBM and hope you get to chat to someone with the same problem soon. Take care and glad you have found this site. xxx

[huggs]

Hi Darthveda,

Sorry to hear that you have such a rare condition. Its bad enough having the more usual ones that we know about and can hopefully support each other. Remember, you are not alone and you can come on here at any time day or night and someone, somewhere will respond to you. If you click on the red balloon of the British Lung Foundation, a little way down the page a helpline number will appear. They are fully qualified respiratory nurses and are a mine of useful advice and information. Honestly, their help to me has been invaluable so it is well worth contacting them. Hope you are ok and get the information and help you need. hugs xxx

[Hidden]

thanks sassy59. It is good to hear from someone who just recognises this condition. I don't black out but when I increase my breathing rate, or bend or lie down, my bronchi and trachea flatten and I find it hard to breathe out. I also get loud noisy breathing which is embarrassing in public! Pete's condition sounds a lot more severe than mine. I hope he is OK. darthveda