50 yo woman with NSIP and IPAF

I’ve recently been diagnosed with NSIP and IPAF, types of ILD. Does anyone here also have this condition? I’d love to connect and learn from your experience so I know what to expect.

[leo60]

Hello! I’m afraid I can’t help you, but I hope someone here can!

Take care xx

[Hidden in reply to leo60]

Thanks Leo- I’m hopeful for someone with NSIP to see this and reply!

[leo60 in reply to Hidden]

If there is, I'm sure they will ! xx

[Alberta56]

Welcome to the forum. There are people here with ILD. I hope some of them will be along soon. You could try searching 'pinned posts' or telephone the helpline on 0300 222 5800.

[janedivney]

Hello. I just put ILD in the search box and these came up (hope the link works)

healthunlocked.com/search/p...

[MoosterMoo]

Hi, I was diagnosed with ILD 12 months ago. Not the same type as you though so I can't really help. There is a NSIP and ILD group on Facebook though that has a lot of members.

[Hidden in reply to MoosterMoo]

Thank you so much for the info! How are you feeling physically and mentally since the diagnosis?

[MoosterMoo]

I've sent you a message on chat 😊 x

[Regallady63]

Hi I have Fibrotic NSIP have had for about 5 years now.

[Hidden in reply to Regallady63]

Has your breathing stabilized due to meds they put you on or has it declined quickly? I’m just trying to get a sense of whilst to expect over the next 5-10 years. I have a combo of NSIP cellular and fibrotic with autoimmmune features. Just started on immunosuppressants.

[Regallady63 in reply to Hidden]

At the moment I'm only , on part time antibiotics and an inhaler and have been for a while, have just had another chest CT scan as they think it is getting worse in my left lung, if you take your time and try and adjust to what you can and can't do it helps I used to be a bull in a china shop rushing around I've had to learn just to slow down not easy though x

[Hidden in reply to Regallady63]

Thanks- I’m not ready to slow down!

[Regallady63 in reply to Hidden]

neither am I but if i start rushing i struggle to breathe so don't exactly have a choice it's the way it is xx

[Hidden]

Wishing you the best!