Okay so after moaning about waiting for a diagnosis last week I have now received the news that my results strongly suggest I have the above condition which is rare. It appears to only be affecting my trachea/bronchi but the research I have carried out so far paints a fairly bleak picture. Any good support groups, research, articles anyone knows of for me to look at?
Relapsing Polychondritis: Okay so after... - Lung Conditions C...
Relapsing Polychondritis
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Janey5148
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Long words which I'm afraid don't mean anything to me!! Why don't you try the BLF Helpline - they might be able to point you in the right direction.
Good luck, and do let us know. By the way, anything you Google sounds bleak!!
Sue x
Can try patient.co.uk type subject and can reply to other suffers
Look on facebook for relapsing polychondritis, there are 2 support groups. The .org in USA is the best one. I have found this group to be excellent support and give great information.
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