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Sclerosis lips.

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I’ve had scleroderma since I was seven years old.


I’m having trouble with my mouth and my lips. I’m 50, sometimes surprised I’ve held on so long, with so many complications, but my lips, or what’s left of them, have really suffered and now I have what looks like smokers lips. I’ve never smoked a day in my life.  My mouth is also tiny. So small a dental visit is quite difficult.


Anyone else have this problem? I need help and suggestions.

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Yes, it is due to Scleroderma. I have similar condition for over 10 years. Lips numb, can't open mouth completely, can't detect food particles on lips, and many more. I have not found any solution or ways to manage it.

Kind regards,





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Hi MaryAnn,


Welcome to these forums!


I'm sorry to hear that you've been suffering with scleroderma for such a long time and have had a plethora of symptoms to cope with. Compared to the number of years you've been afflicted, I'm a comparative scleroderma novice (diagnosed 2009) and thankfully I've not experienced the  Microstomia (Small Mouth) and Scleroderma problems you describe (and I'm hoping that pleasure will be indefinitely postponed! :wink:) although I have had to have several teeth removed (at great expense!<boo hoo>).  I've included a link to our medical page on Scleroderma Dental Involvement, which I hope you'll find helpful and informative.


I'm assuming that you have been consulting a listed scleroderma expert, as I'm sure that you're aware that this complex disease does require specialist knowledge and expertise in order to obtain the most effective treatment. We would also recommend that, if possible, you consult a specialist dentist, who is aware of the problems of microstomia and can therefore minimise the trauma you experience when having to have any dental work done.


I've found a rather old thread about Dental problems, which may give you some further reading and support.


Kind regards,



Jo Frowde

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ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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