PPFE: Hi I am 32 years old, and have a... - British Lung Foun...

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PPFE

Nabela profile image
Nabela

Hi I am 32 years old, and have a rare lung condition called Pleuroparenchymal fibroelastosis. ( PPFE )

Before i share my story in more detail, i wanted to knw if anyone has the above lung condition, i have read up alot on PPFE it is similar to Pulmonary Fibrosis, but there isnt anything out there in terms of treatment etc.

It would be nice to here from someone, as i feel I am the only one with this condiditon. It would be good to share thoughts and information. :-)

Thanks

Nabela :-)

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16 Replies

I don't have your condition but just wanted to say welcome to the forum. :)

Hi Nabela,

I was diagnosed with PPFE this past May after a lung biopsy. i am 46 years old and reside in the US.

Nabela profile image
Nabela in reply to Trinitee

Hi Trinity,

How are you keeping?

Are u being looked after well?

If you dont mind me asking what have the doctors suggested for you in terms of treatment ?

Thank you for getting in touch.

:-)

Trinitee profile image
Trinitee in reply to Nabela

Sorry for my delayed response, my daughter had a baby in September so things are extremely busy here!

I am hanging in there but am steadily declining, little by little, every day. I was told I had PPFE and scheduled for a followup a year later. I reside in the US and unfortunately the the care for this disease can be a hit or a miss, depending on the physician seen. The pulmonologist who diagnosed me said lung transplant was the only curative option.

The link I provided in my initial response is very informative as there are several people with PPFE commenting. Hope you are doing well.

Trinitee

Hello Nabela

I hope you are well.

My partner Mash had PPFE and sadly died in January this year.

There are only about 100 confirmed diagnosed cases worldwide, so it is very rare, though it is generally accepted that as a newly classified disease, the numbers will keep growing as people have got it are properly diagnosed. Treatment wise I think it depends a bit which country and consultant you are under -Mash was under Royal Brompton in London.

Take care, Claire

[Edited by moderator]

Hi

My name is Saima

Just to let you know that Nabela sadly passed away on the 5th of July. Nabela was my beautiful baby sister and I will miss her so much.

annienell profile image
annienell in reply to Saima23

Hello Saima, I am so sorry to hear this news of your sister Nabela. Thank you for taking the trouble at this sad time to let us know. My sincere sympathy to you and your family. Annie x

Saima23 profile image
Saima23 in reply to annienell

Thank you for your kind words annienell, I would love to continue being a part of this forum as it makes me feel close to my sister xxx

annienell profile image
annienell in reply to Saima23

You are welcome here Saima. x

SarahLotus profile image
SarahLotus in reply to annienell

I am so sorry to hear of your sisters loss please accept my sincere condolences for you and all of your family. My daughter has the same condition so I know what you must have been through in those difficult times.

Sarah

Dear Saima,i am so sorry to hear of your sisters passing.please accept my sincere condolences for you and all of your family.thank you for letting us know...kindest regards Ski's x

Saima23 profile image
Saima23 in reply to skischool

Thank you for your kind words, truly nothing will ever fill the void left in my heart. Being a part of this forum allows me feel close to Nabela ❤

Hi Nabela, 👋

Welcome to the forum. I've never heard of your condition, but I just wanted to welcome you. Please do stick around and tell us more about yourself and your condition of you'd like to.

So nice to meet you.

Cas xx 🌞🌷

Hello Saima I'm so sorry to hear if the loss of your dear baby sister. Please accept my condolences and know that you are very welcome on this forum...lots of love xxxx

Saima23 profile image
Saima23 in reply to breatheeasy1

Thankyou ❤

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