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Joined: Oct 08, 2011


Posted by @bamarn, Oct 8, 2011

Does anyone have to live with Scleroderma ? I was DX 13 years ago with . Its such an aggravating disease to live with. I am the only one in my family on both sides that has it. I dont think people realize how you may not look like your in pain and you really are. I seem to hide it well. I hate the looks I get when people see my fingers or the dark spots on my arm.



Posts: 2
Joined: Oct 09, 2011
Posted by @rayray15, Oct 10, 2011

hearing you share your srory had me think about alot i don’t know wat is scleroderma but i could tell you are a strong person


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Joined: Oct 12, 2011
Posted by @bobthebuilder54, Oct 13, 2011

Hi, yes I was dx first with lupus first then changed the dx to scleorderma, then changed it again to uctd with features of scleroderma, lupus and now they dx me with a progressive muscle disease and neuropathy, not to mention the microscopic colitis and my hyporthyoid. So I know just what you are talking about. Do you have Raynauds also. Mine gets pretty bad when it starts to get cold, or I am stressed. Right now not bad, but I quit work and not having the stress from that has helped the raynauds attacks. Do you have anyother autioammune diseases? What do they have you on for a theatment?
Nice to meet you,


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Joined: Dec 04, 2012
Posted by @hayleesmom2005, Dec 4, 2012

I have gone through much of the same. I have very elevated levels of scl 70. Gastro involvement , lung involvement and kidney involvement. What was your prognosis.

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