Help for IPF: if anyone out there... - Lung Conditions C...

Lung Conditions Community Forum

55,236 members66,014 posts

Help for IPF

Flowerpower12345 profile image

if anyone out there struggled coming to terms with their diagnosis of pulmonary fibrosis, and was offered no help and little explanation of what it is look up Action for Pulmonary fibrosis which is a charity and can offer you lots of information and help so you don’t feel you are alone with this devastating diagnosis.

Written by
Flowerpower12345 profile image
Flowerpower12345
To view profiles and participate in discussions please or .
16 Replies
CarolMcl profile image
CarolMcl

Thanks for the information 🌹

Flowerpower12345 profile image
Flowerpower12345 in reply to CarolMcl

👍🌻

CarolMcl profile image
CarolMcl in reply to Flowerpower12345

I've looked and found a support group near me, waiting on a reply from my email 🌹

Blyth1 profile image
Blyth1 in reply to CarolMcl

Like you I looked up a local support group, have been to a couple of monthly meetings. The people there were very welcoming. They have input from the hospital ILD nursing staff. Speakers on a variety of subjects. Interesting as I looked at the group I was one of two people , on both occasions, who was a female with PF .

CarolMcl profile image
CarolMcl in reply to Blyth1

Received a reply and information regarding the meetings, every 2nd Thursday of the month 🌹

Flowerpower12345 profile image
Flowerpower12345 in reply to CarolMcl

That’s good Carol , I hope you find it helpful, and don’t forget to look up Action for Pulmonary Fibrosis, lots of information and a helpline if you have any questions 🌻

CarolMcl profile image
CarolMcl in reply to Flowerpower12345

Hi Flowerpower12345, that's the group I looked up after you posted the information. As you you said, there's lots of information on their site and getting to speak to others with pulmonary fibrosis will be very helpful 🌹

Flowerpower12345 profile image
Flowerpower12345 in reply to CarolMcl

Certainly will, makes you feel your not on your own 😊

CarolMcl profile image
CarolMcl in reply to Flowerpower12345

And that's exactly how I feel just now......on my own 🌹

Flowerpower12345 profile image
Flowerpower12345 in reply to CarolMcl

Oh bless you, private message me if you want to, I know it’s so hard.

CarolMcl profile image
CarolMcl in reply to Flowerpower12345

Thanks 🌹

Flowerpower12345 profile image
Flowerpower12345

that’s great, fab.

Hazel-mary profile image
Hazel-mary

thank you x

Alberta56 profile image
Alberta56

Good to read that. it sounds asif there is even less support out there for PF than there is for bronch.

Izb1 profile image
Izb1

So pleased that you have found a support group, it makes world of difference to how you deal with your diagnosis x

armstrong2 profile image
armstrong2

thanks flowerpower 12345 for your support nice to know there is support out there

You may also like...

Dad recently diagnosed with IPF

support 'lessons'. He has very little appetite. I suppose I just feel a little useless, and...

IPF or idiopathic ILD?

idiopathic pulmonary fibrosis and keep being reassured that I don't. My question is whether any of...

Advice re pulmonary fibrosis

with pulmonary fibrosis and is coughing dreadfully to the point he aches all over. Does anyone have...

Self help for Emphysema

desperate. I feel I cannot wait a month to see a specialist. Can anyone suggest anything I can do...

Helping to Raise COPD Awareness.

funding is made to help benefit people with serious lung conditions in the future. Please feel...