Pleuroparenchymal Fibroelastosis (PPFE) and rare lung diseases

[Kathi]

Hello!

I was diagnosed with Pleuroparenchymal Fibroelastosis (PPFE for short), it’s rare and difficult finding others with it, however I have found a small group. I was wondering for people who are diagnosed with disease where you go to find information on doctors who treat that disease? I know Google is a resource, but so much to weed through there. Just wondered if anyone found some place where they can find doctors treating their actual disease.

Thanks!

Kathi

[Charlene Marshall]

Hi Kathi,

Thanks for connecting on our forums, and although I wish none of us were diagnosed with any type of lung condition, you are most welcome here to connect with others. I’m not familiar with anyone off the top of my head who has PPFE but I will give it some more thought. Does anyone know of PPFE and could connect with Kathi for support? Does your doctor who diagnosed you have any idea on specialists that might treat others for this disease, or where support groups might take place? I’d check the Pulmonary Fibrosis Foundation (maybe contact them) and see if they know, a good place to start anyways. Goodluck, I’ll connect back if I come across any information Kathi. Keep in touch!

Charlene.

[Phyllis Della-Latta]

I am also interested in connecting with others about their PPFE disease progression, treatment regimens and clinical trials. After a VAT lung biopsy my husband was diagnosed with this rare disease. He had a working diagnosis of IPF for the last years along with other pulmonary findings. ANCA serology tests just converted to positive suggesting Wegeners autoimmune disease but the VAT samples did not show granulomas or other evidence of vasculitis. Thank you.

Phyllis

• This reply was modified 7 months, 1 week ago by Phyllis Della-Latta.

[Maura Breen]

I was diagnosed with PPFE in December 2019.  Since then I have tried OFEV but serious side effects caused me to stop taking it within 7 days.  I am currently on a low dose Esbriet regimen. I am being treated at the Brigham & Women’s Lung Center in Boston and have been very happy with the care I have received.  Unclear at this point if the Esbriet is working.  I go in for a PFT next week which should give me some indication if the disease has progressed.  Still walking, playing tennis, strength training etc.  happy to talk with anyone with the disease.

[Ron]

A quick Google search of PPFE group brought up this Facebook group:

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&cad=rja&uact=8&ved=2ahUKEwjT6eqEjaDxAhWeFjQIHVQbArkQFjAJegQIAhAD&url=https%3A%2F%2Fwww.facebook.com%2FPleuroParenchymalFibroelastosisSupportGroup%2F&usg=AOvVaw2SdqBxM6G8cAgn5TM0YXzi

Hopefully the link works because I would hate to try to type all that. If it doesn’t work I would suggest googling “PPFA group” and you should come up with the link.

Ron

 

[Kathi]

There’s a FB group for “Pleuroparenchymal Fibroelastosis (PPFE) Support Group” that I hope PPFE patients feel helpful specific to PPFE.

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