JJ-Knitter

Does The "sine Scleroderma" Form Ever Develope Skin Thickening

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This is going to sound like a daft one :P , but do patients with the sine scleroderma form of systemic scleroderma ever develope the characteristic skin thickening of other forms of SSc? I've got a patch near each cheekbone and I'm getting concerned about shrinking mouth and stiffening hands. ;) I'm most concerned about the hands as you could probably guess by my nom de plume.

 

JJ-Knitter (oh yeah!) :D

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Hi there,

I have Sine Scleroderma and unless it's my imagination, my mouth has gotten smaller. My hands are stiff and puffy in the morning too. The dentist always comments on my mouth, telling me to get some fat pads on my face. My top lip has definitely thinned out and I have the vertical lines. I have not had any problems with skin hardening anywhere.

 

I too would like to know what exactly causes the mouth to get smaller...is it supposed to be from the skin hardening near face? I have always wondered and it would make sense that it was from something else, but what?

 

Could it be that you actually don't have the sine form after all?

I am sure someone with more knowledge will pipe in ....I just thought I'd reply since not many have sine on this forum.

Jennifer

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JJ and J,

I would assume that sclero-sine-sclero would never result in skin hardening, but "never say never". All I could find was the this form of sclero is extremely rare and has no skin involvement. If one were to examine me now, you would think that I had sclero-sine-sclero because I have no hard skin anywhere. Initially, I had it on my hands, but that has softened. Also initially, I had microstomia (small mouth). As my mouth opening got smaller and smaller so did my cute, puffy lips. Along with that came the deep vertical lines. The skin never got hard around the mouth, but it felt like the muscles shrunk preventing me from opening my mouth. I no longer suffer from small mouth, but unfortunately, the lips never came back and the lines didn't disappear. Oh well - I just smile a lot and no one notices. That's what I keep in my head anyway. :D

 

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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