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Newbe Just learning about Scleroderma

new hands lung

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#1 Saddleman



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Posted 23 April 2016 - 12:16 PM


Just finding out about Scleroderma. I have the internal one.


Have had problems for 4 months, first hands swollen, then chest cold 2 months.   I know they have said you have scleroderma and Interstitial Lung Disease so getting ct scan, breathing test and all four x-ray to the Pulmonary Doctor.


Also I have had type I diabetes for 55 years 2 shots a day from 61 to 02 then got on a pump. I like to see what people are doing with this disease.


Dan (One of the 25%) 

#2 Joelf


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Posted 24 April 2016 - 10:08 AM

Hi Dan,


Welcome to these forums!


I'm sorry to hear that you've been suffering with scleroderma and diabetes and are awaiting the results of the tests you've had. Unfortunately, scleroderma is very difficult to diagnose, especially when coupled with diabetes and we do recommend that our members consult a listed scleroderma expert, in order to obtain the best available treatment for this complex disease.


I've included a link to our medical page on Lung involvement, which I hope you'll find helpful and informative.


Please do keep us updated with the results of your medical tests.


Kind regards,

Jo Frowde
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International Scleroderma Network (ISN)

#3 Kathy D

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Posted 29 April 2016 - 08:28 PM

Hang in there Dan!  It takes around 2 weeks for the antibodies tests to come back with results.

Diffuse Scleroderma Diagnosed March 2009

#4 Shelley Ensz

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Posted 03 May 2016 - 04:06 PM

Hi Dan,


Welcome to Sclero Forums!  I'm sorry you have scleroderma, and possible lung involvement, but I'm very glad you found us. I agree with Jo, if at all possible, try to get to see a listed scleroderma expert (if you haven't already) for the best possible care.  They are very few and far between, only a few dozen in the U.S. 



Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.