Stupid weather+my lungs=no sleep so thought I'd get in some research about my latest query...Can anyone help me understand the role of collagen in the lungs? I'm back to my new consultant (ditched the last one!) next week and need to know what I'm talking about...I have a genetic collagen defect so my joints are hypermobile and my tissue is generally lax and fragile. There's not enough research to understand it all properly and have definitive tests but I'm somewhere on the Ehlers-Danlos Syndrome spectrum. I've been battling with respiratory consultants for 10 years now as my asthma doesn't fit the box properly and they like to think I'm making up all my respiratory problems. Not sure how it's possible to imagine the amount of gunk that hangs around in my lungs and respiratory tract and that manky cough etc etc etc but anyway...Basic problem is that I very, very rarely wheeze. I feel very ill, breathless, inflamed and sticky but clearly don't swell. (I don't swell generally - dislocations and sprains just produce lots of bruising for me.) This is a good thing as although I feel terrible I never get to the point where my breathing is severely impaired. However, I'm still left drained and exhausted and the multiple doses of bricanyl needed to sort it really mess with my heart rate which has a tendency to be too fast anyway. As I have so many problems to contend with it'd be nice to get this one under control.I also have a constant battle with respiratory infection which doesn't help matters. They're not making much effort to sort that either but tests for CF and a cilial biopsy were both clear.There's also a long-running dispute about my PEF. They insist on assessing it objectively so despite me rarely hitting anywhere near my 'best' and having a lot of fluctuation, it's all 'normal' for someone my age/height therefore there's nothing wrong. I think I've lost a couple of inches to inhaled steroids and a dodgy spine but, regardless, my lungs are most definitely NOT functioning normally! Is it possible that I can overinflate them due to laxity so have a deceptive lung capacity? Argh! Sorry to go on but hopefully someone out there knows enough to help me understand what the effect might be of dodgy collagen in the lungs. There is a documented link between asthma and hypermobility syndrome but I haven't found anything else yet.PS Just in case I have to sack this consultant too (think it's probably pretty likely), anyone know of any decent respiratory consultants in Scotland? I'll have been through both departments in Edinburgh so they're out...
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