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Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!



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#1 Lynnhb



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Posted 05 August 2014 - 05:33 AM

My husband recently diagnosed with PAH due to scleroderma.  I was told 1 in 10 people with scleroderma has this.  Any insight from anyone on this disease and treatment.

#2 Joelf


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Posted 05 August 2014 - 06:36 AM

Hi Lynn,


Welcome to these forums!


I'm sorry to hear that your husband has been diagnosed with Pulmonary Arterial Hypertension and I've included a link from our medical pages to give you more information about this disease and the treatments available.


We do recommend that our members, if possible, consult a Scleroderma expert, as sadly many rheumatologists do not have the knowledge and expertise to deal with this complex disease which does require specialised  treatment.


Now that you've found our forums and joined our community, please do have a browse around our Medical pages, Videos and News forum.


Kind regards, 

Jo Frowde
ISN Assistant Webmaster
ISN Sclero Forums Manager
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International Scleroderma Network (ISN)

#3 Lynnhb



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Posted 05 August 2014 - 07:49 AM

I never posted before, but have found this forum very helpful.  As we found different symptoms  here, we pretty much knew it was scleroderma.  It was officially diagnosed in April.  Pulmonary Hypertension in May and PAH confirmed in July. Rheumatologist claims to be knowledgeable about Scleroderma and Pulmonologist definitely has experience with Scleroderma and PAH; they are working together on the treatment.