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janey

Risk Factors For Mortality In Patients With Systemic Sclerosis And Interstitial Lung Disease

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Risk Factors For Mortality In Patients With Systemic Sclerosis (SSc) And Interstitial Lung Disease (ILD).

Mortality in patients with SSc and ILD is increased in those with an early and severe impairment of pulmonary function, concomitant cardiac involvement and elevated ESR (Sed rate), but not in Scl-70 positive patients. Beatriz E. Joven. 6/6. ACR 2007. (Also see: Mortality and Prognosis, and Pulmonary Fibrosis)

This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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That is an interesting article. I never seem to fit into any of these studies....where do people with (diffuse) systemic sine sclerosis fit in? I am scl-70 negative.

Makes me also wonder if we're assumed to be with scleroderma at first symptoms (heartburn, Raynaud's, whatever it may be) or not until diagnoses, or when it gets so bad you see the dr.

Tang

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Tang,

You raise a great question. So many studies or reviews use the amount of skin involvement as a factor in the evaluation or participation criteria. This particular review didn't appear to use skin involvement as a criteria for having scleroderma, but rather as a mortality rate factor. I wonder if any of the patients evaluated did have "sine".

 

Here's a link from our clinical trials page that list the clinical trials on scleroderma that our listed through the U.S.Institutes of Health. You might be interested in going through these and see if you meet any of the eligibility requirements. You are such a unique case in so many. :)

 

I hope you are feeling some improvements with your digestive issues and GERD.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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What an article! Needless, since I am going to my dr. next week, it got printed. And since the remission (and party as I also like to call it) is over, it was a bit of a choker.


I hope that your day goes well and you don't have any worries.

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OK - I'm new to all of this so can someone put this in layman's terms? I have the start of the lung involvement and have another apt in April to watch to see the progression. Should I be worried here? I have no idea what my numbers are or anything and maybe I'm not asking the right questions and getting the right information at my appointments.

 

Thanks for helping a newbie!

 

In case you haven't been watching the weather - when you watch I'm in Central Minnesota where the windchill is 25 below and we are to get a snowstorm of over a foot of snow!!!!!!!!!!!!! Great for the lungs huh?

 

Peggy

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Hi Peggy,

 

I live in Minneapolis and am also dreading the impending storm. When did you get diagnosed? What other issues do you have? Do you have a support group that you attend?

 

It's so exciting to meet someone else with Scleroderma in MN!

 

Sincerely,

Denelle B)

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Peggy,

It seems to me that the article says survival rates are increasing. Woo hoo! Doctors and researchers used to stay if you had sclero you only had 5 years... some articles on the internet still say that - if you read that know it's old news. This article confirms what some of us already know - that we are gonna be around for a long time!

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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