I have been diagnosed with SSc-PAH - Lung Conditions C...

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I have been diagnosed with SSc-PAH

Shackackarn profile image
11 Replies

I have had lots of tests done and they have found i have mild Emphysema and systemic sclerosis associated pulmonary arterial hypertension (SSc-PAH) and would like to talk to someone with similar condition.

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Shackackarn profile image
Shackackarn
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11 Replies
Ergendl profile image
Ergendl

Welcome to the group, Shackackarn. It's lovely to have you join us.

Sorry I can't help you with your problem. While I have mild ephysema, I don't have sclerosis or PAH.

Hopefully someone will be along soon who will be able to share their experience with you.

Gingerninjas profile image
Gingerninjas

hope you can find someone. I’ve found people to be very informative and supportive .

Izb1 profile image
Izb1

Hi Shackackarn and welcome to the site. I dont have any advice for you but perhaps phone the helpline above x Call on 0300 222 5800

Dottie11 profile image
Dottie11

scleroderma and Raynaud's.are on HU they might be able to help.

Kate124 profile image
Kate124

hello I do have moderate emphysema and PAH but not sclerosis. If I can help with anything just ask.

Will57 profile image
Will57

I have severe COPD and have just been diagnosed with Pulmonary hypertension after undergoing a cardiac catherization test at Papworth Hospital and the result means I cannot have the LVR Operation to my right lung as I would not survive the operation. There are only around 6 centres in England which oversee this condition so what test did you undergo and where to confirm your PH. I go back to Papworth in August to see how I'm coping with the new meds. Hope you get the correct follow-up

watergazer profile image
watergazer

Hi and welcome. Alas sorry I can’t advice but wish you well in your journey x

CDPO16 profile image
CDPO16

Hi and welcome. I have emphysema but not your other conditions. Hope you get the support you are looking for. Best wishes.

Alberta56 profile image
Alberta56

Welcome to the forum. I don't think anyone here has your combination of conditions, but several folk have one or two of them. i hope you can get some helpful advice.

watergazer profile image
watergazer

Hi and welcome This is a welcoming and supportive site. Hope you find someone to help you x

Brychni profile image
Brychni

Hi there! Possibly in the same boat. I've direct messaged you. All the best

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