New ILD Magazine:

Thought this new on-line magazine might be of interest for those with IPF / Sarcoidosis/ Pulmonary Firosis etc. belung.com/

[2greys]

Thank you. Another one to add to my collection of bookmarks. Just because I do not have ILD does not mean I am not interested in learning.

[Hidden in reply to 2greys]

I would love to see something like this for COPD too especially as it is an international magazine.

[sarcoid1234]

Pippa: Thank you very much. I have sarcoidosis, so the information contained in the website will be very interesting. I had no idea this website exists.

[Billiejean_2]

Thank you for posting this link Pippa. To be honest, I thought it was well representative of the majority of such online magazines and articles - full of ifs and buts, might and may, should and must but very little in terms of any practical information.

Occasionally an article comes along that's factual, practical and helpful to the person reading it. I think you posted one on ways of delivering O2, here about a week ago, that was excellent.

But so many of these articles are just completely pointless, referring to what 'should' be done, what 'may' ( or may not) work and describing incomplete research projects. I used to read them avidly but more and more realised that they weren't increasing my knowledge or power to manage my illness, one little bit. On the other hand, they frequently cause anxiety with all the ifs and buts and half baked theories.

On any given week, I think I learn more here from other patients' experiences and tips on this forum, then from online magazines such as this one.

I'm not trying to be awkward, just expressing something I feel quite strongly about and have mentioned here a few times previously. Anybody else feel the same ?

[Hidden in reply to Billiejean_2]

Yes I understand what you are saying but it might be worth looking at again in a few months when it has had time to settle in and get feedback etc. It is new - more importantly I think the idea is to get more communication going re ILD's internationally. I have COPD so can't judge though - just passed it on as saw it announced on Twitter a few days ago.

[Billiejean_2 in reply to Hidden]

Since becoming a member here, I signed up for various magazines like the one from the ERS. Absolutely thrilled at first to be getting these articles but now they go into my trash.

I think the icing on the cake was an article I was reading about Bronchiectasis, which was setting out a neat little table of how long 'victims' might hope to survive, based on things like hospital admissions, comorbidities, etc., etc. That one put me right off my breakfast b

I'm not for one moment suggesting that there is no useful health information on line but you have to do quite a bit of rooting about to get the good stuff.

[TwinklingStar]

Dear Pippa

Thank you for posting the link to the ILD (Interstitial Lung Disease) magazine. Although it was not very informative I found it very interesting to read. I think the real issue is that ILD is classed as a very rare group of lung conditions - some of which they know the cause and others for which the cause is unknown. There is so little information regarding ILD because they know very little about the condition.

It is very helpful to me to see and understand why Consultants are unable to answer questions, provide information and understand this condition and to see Consultants and researchers admitting the facts - they do not have this information, they frequently do not know the cause, and they frequently cannot offer any treatment. Even being on Oxygen often does little to help the shortness of breath. However, it does help to protect our vital organs and to help push the oxygen levels back up. Facts cannot be provided when the information is not available and so we get given very little information about ILD when we are diagnosed purely because so very little is known.

I wish GP's and other medical personnel were more aware of the seriousness of this condition. Information from links like this can help people to understand just how serious it is to have this condition. The more information published about ILD the better! Late diagnosis causes irreversible damage to the lungs - damage that probably could have been prevented had I been put on oxygen sooner! I hope the medical profession will gradually be educated enough so that the diagnosis is not delayed.

Thank you for helping to spread what little is known about ILD. If it prevents even one patient from suffering with irreversible damage to their lungs it will make the world of difference for that patient.

I read a large amount of it tonight and look forward to reading it all as soon as I can.

Thank you.

Love and hugs from

Twinkling Star Xxxx