Ideopathy lung disease

Is there a separate forum for this disease? Had a spirometers recently which I was told was normal. Attended hospital for full lung function and told even though spiro showed normal my function tests showed abnormal. Having a hrct scan next week and told reason I was discharged with no treatment two years ago was because there is no treatment for this so will have to wait and see what consultant says about scan. It would be helpful if there is a forum for this disease. Thank you.

8 Replies

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  • You are in the right place winfar so welcome to you. My husband has ILD and is under the Royal Brompton. He is being treated for sarcoidosis and COPD. Maybe you need a full diagnosis for treatment to begin and l hope the scan goes well. Xxxx

  • Just had a thought - do you mean IPF? There are people on here with that too who could advise you. Take care xxxx

  • Thank you for answering. Yes I did mean IPF and I was wondering if there was a forum for this as most people on this site are copd sufferers who are able to discuss medication etc., and it is such a good friendly site but I don't think many ipf sufferers on here. I thought it would be nice if I could communicate with people with same disease. Must say I enjoy reading this site, particularly the odd really funny joke!

  • There are many more members with COPD but Pulmonary Fibrosis accounted for over 8% of our membership two years ago. Hopefully someone with the condition will see your post.

    healthunlocked.com/blf/poll...

  • You can join Pulmonary Fibrosis UK,we have a wonderful Facebook page we know more about IPF than any Drs we are a very supportive group and its a closed group.This is a wonderful site but deals more with COPD,.Sooki.

  • Snooki thanks for your reply. Mrs mummy has put me a link on and I will log on and join. Best wishes for the new year. Let's hope it's a better one for all sufferers.

  • Welcome winfar this is a very friendly group and you'll find the same welcome on Pulmonary fibrosis uk as good but do have more info on treatment that helps slow the desease down. I have IPF and have been a member of both groups for a few years they are all helpful and friendly but above all understand how your feeling. Just pop in and your sure to feel better X

  • Thanks Imelda for your reply. Will stay in both forums.

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