PLCH: Hi I was just diagnosed with... - Lung Conditions C...

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PLCH

scotty2533 profile image
8 Replies

Hi I was just diagnosed with polmunary langerhans cell hyptiosis. Anyone out there wants to talk or has any advice?

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scotty2533
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8 Replies

Hiya Scotty. Welcome. You have got a very rare condition. I am sure there are people with the same condition on here. I wish you all the best. Hope we can help when issues arise in the future. Cheers GERALD

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scotty2533 in reply to

Thank you. I have read everything about this and i have a great team of doctors. Just would be nice to meet people who deal with the same conditions

in reply to scotty2533

At the moment I think they are all asleep. I am in Australia so its 11am here.

cofdrop-UK profile image
cofdrop-UK

Hi scotty and welcome. I don't have the same condition as you but hope someone comes along soon to chat with you about it. Just wanted to say Hi.

cx

sarcoid123 profile image
sarcoid123

Hello. I have just looked it up on this site. Just click on the "magnifying glass" top right of this page and type in polmunary langerhans cell hyptiosis. There are lots of posts in the past. I hope that is of help to you.

sarcoid123 profile image
sarcoid123

On of the posts is from The British Lung Foundation "

"Vicky_BLFHelpline British Lung Foundation

pulmonary langerhans cell histiocytosis is a rare interstitial lung disease. It might be best if you give us a call on 03000 030 555 " I think they are closed at weekends but will be open tomorrow.

scotty2533 profile image
scotty2533

Nice to meet you and thank you

Liamf profile image
Liamf

Hi Scotty my name is Liam I'm 31 an jus bin diagnosed wiv plch an emphysema I am bit confused and worried my doctor didn't no much bou it all I was told was wot she read in book 5min b4 seeing me she told me 2 get more info about the rare disease online so i did but now I dnt no wot 2 believe do u no if plch is a rare cancer cuz thas all

The info I'm getting online an tbh I'm shitting my self if n e body got n e accurate information about this rare disease plz cud u share it wiv me im completely in tha dark all I no is I got a lot of different shapes and sizes ov black cysts in both lungs an bin told it's gonna shorten my life drastically n e info will b much appreciated ty 4 takin the time 2 read my concerns

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