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Scleroderma Pulmonary Fibrosis

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Jennifer, here is a link I found you might find helpful: http://www.medicinenet.com/pulmonary_fibrosis/article.htm.

 

My dad had pulmonary fibrosis and congestive heart failure. I've always believed he had scleroderma, but when I tried to discuss it with his heart dr. the dr just brushed me off, like I didn't know what I was talking about. It's difficult for me to think about what may lie ahead for me, after watching my dad slowly suffocate. I wish I would have really pushed that dr at the time, but you know hindsight is always 20-20. So far, for me, my lungs remain clear, and I know I have a good dr whom I trust and like and I think he is taking good care of me.

Wishing us all better health.

~whirlway

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My understanding is that the use of primary or idiopathic means that there is no apparent underlying cause for whatever disease is being described. For example, primary Raynaud's, experienced by a much broader range of the population stands on its own, while secondary Raynaud's has some other underlying or root cause (e.g. lupus, scleroderma).

 

The word idiopathic means "of unknown cause" This article on Merck Online does a great job of explaining primary or idiopathic pulmorary fibrosis.

 

An ISN link to this PubMed abstract looks studies outcomes of Pulmonary arterial hypertension related to scleroderma (PAH-Scl) compared with the idiopathic form of PAH (IPAH)


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Jennifer--

 

I had read that it was usually the case that PF in Scleroderma was less severe than Idiopathic PF. Not a doctor of course, but that's what I came across.

 

Michael In Florida

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