PPFE info

[laf1977]

Hello, I'm a 43 year old woman just diagnosed with fibroelastosis and I'm looking for some reliable info on how to manage it and how quickly it progresses. Can anyone help point me in the right direction?

Thank you

[Hidden]

Welcome laf1977,

I am not familiar with fibroelastosis, but there is information on BLF home pages, see link below:

blf.org.uk/search/site/fibr...

Hope this is of help

Best wishes BK

[laf1977 in reply to Hidden]

Thank you BK! Yes, I have seen these articles but the BLF don't seem to have anything more informative. Appreciate you sending this and responding. Thank you!

[Hidden in reply to laf1977]

Sorry I am unable to be of more help, perhaps give the BLF helpline a call on Monday they may be able to advise you or refer you to more information.

Best wishes BK

[Izb1]

You may be better on the british heart site, sorry I couldnt offer more help and advice x

[laf1977 in reply to Izb1]

Thanks - yes - It does affect the heart too but it’s a lung disease called PPFE

[Izb1 in reply to laf1977]

Sorry its not something I have heard of before. I hope somebody on here can advise you x

[laf1977 in reply to Izb1]

That’s ok! Thank you for trying 😊

[Walkwalkwalk]

Hello laf1977

I have not contributed to this site but been looking at it for some time with admiration for the many valuable contributors.

I also have a diagnosis of PPFE since 2016 having originally been diagnosed with IPF in 2006.

It is difficult to get information on this second diagnosis and I have been trying to join the PFFE support group on Facebook with no response. I am following a few other avenues but meanwhile have treated my healing as pulmonary fibrosis with this a differential diagnosis.

This has been a bit of a rollercoaster with cardiac involvement a recent addition.

I do understand your frustration and will be very happy to share information with you

I hope that my longevity since diagnosis will be comforting. It is to me!

At least the information on prognosis for PPFE is more than twice that I originally received for IPF. On this site there will be many who can tell you how inaccurate those are. I joked recently with my pulmonary consultant that perhaps now I could combine the two and explain why I am still alive. I didn’t get a chortle!

My apologies to the members of this site for not being in touch before this but so many of you are so knowledgeable and I have rarely felt that I would add much to the conversation. You all have my respect and it’s time I contributed.

Grace

[laf1977 in reply to Walkwalkwalk]

Hey Grace, thanks for your response and I'm sorry for the rollercoaster you're experiencing. Sounds like you have a lot going on. Interesting about the cardiac involvement - did you speak to your doctor about this? Do you mind me asking about your symptoms and how you manage them? Thank you

[SquirrelsHolt]

Hi there 🙋‍♀️ laf1977 and it's most likely that along with @walkwalkwalk , you'll find other members who can advise you etc. One suggestion was to ring the BLF Helpline on Monday and thats excellent advice. PPFE is something I've not heard but many members may have - being used by people all over the world sometimes replies can take a day or 2. I hope you get more replies and that you'll 2more knowledgeable on PPFE. Best wishes. 🐿🌈 .

[laf1977 in reply to SquirrelsHolt]

Thank you for your reply.