Help for IPF

[Flowerpower12345]

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.

[CarolMcl]

Thanks for the information 🌹

[Flowerpower12345 in reply to CarolMcl]

👍🌻

[CarolMcl in reply to Flowerpower12345]

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

[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 in reply to Blyth1]

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

[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 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 in reply to CarolMcl]

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

[CarolMcl in reply to Flowerpower12345]

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

[Flowerpower12345 in reply to CarolMcl]

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

[CarolMcl in reply to Flowerpower12345]

Thanks 🌹

[Exflex in reply to Flowerpower12345]

Thanks, recently diagnosed with IPF in August 2024. Where do I find ‘Action for Pulminary Fibros’?

Thank you.

[Flowerpower12345]

that’s great, fab.

[Hazel-mary]

thank you x

[Alberta56]

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

[Izb1]

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

[armstrong2]

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