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Sweet

Shrinking Mouth

9 posts in this topic

Hi Sweet,

 

That's a good question! We have a section on it at:

http://www.sclero.org/scleroderma/symptoms/ski...z.html#collagen and here's an excerpt --

 

"Patients with certain connective tissue diseases may have an increased risk of severe allergic reactions to collagen injections. These connective tissue diseases include, but are not limited to, rheumatoid arthritis, scleroderma, and juvenile rheumatoid arthritis. They also include polymyositis and dermatomyositis (PM/DM), which are chronic, progressive, and sometimes fatal inflammatory disorders.

 

"Thus, collagen injections should be used with caution in people who have had these diseases. Some experts recommend that people who have had these diseases should either not be given collagen injections at all or should be given multiple skin tests before treatment.

 

"Scleroderma Lips Deep lines around the lips worry many scleroderma sufferers but unfortunately collagen injections and laser treatment are not advisable as they may cause scarring. Tightening of the skin of the face may lead to microstomia - a small mouth. Facial and mouth exercises may help. "Disappearing lips" can be a very upsetting cosmetic problem and a reputable plastic surgeon may be able to perform an operation called a mucosal advancement. Royal Free Hospital (Also see Dental Involvement)"


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.

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I was playing around with the Avatar instructions, and accidentally deleted my own Avatar. DUH. :blink:

 

Thanks for noticing, Sweet. I have it back now.


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.

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Sweet,

Check into Restylane. I know that has worked on some.

Smiles,

Jennifer

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I'm not aware that Restylane has been tested/approved for use with scleroderma, though.

 

"The safety of Restylane in patients with increased susceptibility to keloid formation and hypertrophic scarring has not been studied. Restylane should not be used in patients with known susceptibility to keloid formation or hypertrophic scarring."

 

Scarring can be quite an issue with scleroderma patients, so it would be advisable for everyone to consult a scleroderma expert before attempting any sort of correction.

 

Sometimes, distraction is the best treatment of all. For example, if you wear a purple hat with a large green feather, people will certainly notice and remember the hat or the feather, before noticing or remembering any other feature.

 

Particularly, if you are a guy. :blink:

 

Purple hats, anyone?


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.

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Thanks Jen and Shelley,

 

I just don't know if I'll do anything about it. I would hate to take the ris, of looking worse - trying to look better!!! We'll see, I'll put it on the back burner for now.

 

Love Sweet


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet!

 

I injected Restylane in my lips about 3 months ago and am very pleased with the results.

 

I did, however, inform my Dr. beforehand. He didn't think the procedure would cause a flare-up BUT he couldn't endorse the procedure either since there haven't been studies done.

 

Whatever you decide to do, best of luck!

 

Claudia

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