So, having recently been diagnosed with the afformentioned condition/disease I really want to see if I can find out other people who have it? I have read about it in scholarly articles but other than the limited research out there, there's very little written about it. I understand the disease, and I have a great care provider, I know it's rare but hopefully I would like to uncover some more about it from others that have it. Thanks.
Tracheopathia osteochondraplastica - Lung Conditions C...
Tracheopathia osteochondraplastica
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TPO1
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4 Replies
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A very warm welcome to you TPO1! I'm sorry I've never heard of this condition so I'm unable to advise you. I'm sure before long , someone will come who knows all about it & can give you the help you need. You could give the BLF a call, they would chat to you about your condition & answer your questions. Take care
Thanks Jessy1, most people I speak to haven't heard of it to be honest! I rang the BLF but they hadn't heard of it either....
Maybe I have a mission on my hands to raise awareness?! 😝
The BLF haven't heard of It?Really? I thought they would be the very ones to give you advice. It is a lung condition after all, I did google it! Did you try putting your illness into search box & see if anything comes up? Good luck
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Good morning all hope your all keeping well.I wanted to see how others cope or have been treated for