Welcome to these forums!
I'm sorry to learn that you have been diagnosed with pulmonary arterial hypertension
(PAH) and you have certainly come to the right place for up to date and accurate information on scleroderma. I've included some links in this post, which I hope you'll find helpful and informative.
Fortunately (or unfortunately, depending on your point of view) I am able to advise you on lung involvement in scleroderma
and the Royal Brompton from personal experience and I have to say that you could not be in better hands for your treatment, as they are experts in this field. Thankfully, I don't have PAH, but I do have interstitial lung disease, which has been treated very successfully by them. In my case, it was diagnosed very quickly, which meant that the treatment I received had the maximum benefit. I was diagnosed seven years ago and fortunately the disease has stablised.
Scleroderma can affect internal or external organs, or both and one of the main problems with it is that it has many different symptoms which affect all sufferers differently. This is what makes it a difficult disease to diagnose
and why we do recommend that our members, if possible, consult a scleroderma expert
. I was actually referred by the Brompton to The Royal Free Hospital, where they specialise in scleroderma, so was very fortunate on both counts.
The journey to the Brompton should hopefully not be too arduous for you; I'm in West Sussex and come up to Victoria Station and then walk from there to the Brompton via Sloane Square and the King's Road, which takes me about 40 minutes.
Please do let us know the results of your appointment with the Brompton.