Any L.I.P sufferers out there?

[Pippydo]

Having recently been diagnosed with L.I.P I would be interested to hear from others with this condition, I understand we are a rarity! Still feel a little shell shocked so any advice or information would be welcome!

[Hidden]

Hi Pippydo, Welcome

I am not sure if you may or may not get a reply from someone with this rare lung disease.

I have tried to find a dedicated community for you but nothing on google is coming up.

However if you put

Lymphoid interstitial pneumonia (LIP) into google search engine you will find there are papers on it published by thorax british medical journal, pdf downloads.

You could chat with the BLF helpline on Tuesday after Easter to see if they have any links for you or know of a dedicated support group for same.

blf.org.uk/support-for-you/...

Welcome to stay around here of course.

Best wishes BK

[Pippydo in reply to Hidden]

Morning, thank you so much for taking the time to investigate L.I.P. I’ve read quite a bit about it (scary stuff!) I will certainly stay around as we are all in a similar place I guess!

[Hidden]

Welcome. As Bkin implies, I suspect you might turn out to be one of a kind here so far, but we do have quite a few members with other types of interstitial lung disease, which as you probably know already is the group of diseases that LIP belongs to. Just a thought, but have you considered also asking via autoimmune related groups? Given that LIP is often associated with rheumatoid arthritis, sjrogens, Lupus, and other forms of rheumatological autoimmune conditions (about 40% of cases occur in this group) you may find people that way. I belong to the National Rheumatoid Arthritis Society pages here, and there are members there with ILD directly relating to their autoimmune issues, so it might be worth an ask. The name of the group is slightly misleading, as the NRAS pages are populated with people that have the whole range of rheum issues, not just rheumatoid arthritis.

Even though it may turn out we don’t have anyone here with lived experience of your specific diagnosis, there is often a lot of crossover between respiratory conditions with regards to tests and treatment generally, so don’t feel like you don’t belong here or won’t be able to access support, factual, moral or otherwise!

[Pippydo in reply to Hidden]

Thanks for the info, I do have Sjorgrens syndrome diagnosed 20 ish years ago so am aware of the autoimmune connection with L.I.P. but will certainly try the rheumatology sites too!

[CDPO16]

Just saying Hi Pippydo (great name).

Sorry that I can't help at all with regard to your diagnosis but this is a great, friendly forum for moral support, general interest and entertainment even if we have no one else with your disease so please feel free to stick around.

[Pippydo in reply to CDPO16]

Morning, thank you I’ll certainly stay connected as nice to hear other people’s views on similar health issues. The name, well, all to do with my lovely dog Pippin!!

[sassy59]

Welcome Pippydo, nice to meet you. Xxx

[Alberta56]

Hello Pippydo. Welcome to the forum.

[HungryHufflepuff]

Hello and welcome 😊

[Izb1]

Hi Pippydo and welcome to the site x