Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Shrinking Mouth


  • Please log in to reply
8 replies to this topic

#1 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 27 October 2006 - 06:50 AM

Hi Everyone:

Has anyone ever had their lips injected to change the look of our shrinking mouths? :unsure:

Thanks, Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 27 October 2006 - 08:47 AM

Hi Sweet,

That's a good question! We have a section on it at:
http://www.sclero.or...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.

#3 Sweet

Sweet

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 27 October 2006 - 08:51 AM

Wow thanks Shelley,

I'll get to reading!!

Where is your cute face next to your post?

*hugs*

Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 27 October 2006 - 09:16 AM

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.

#5 Guest_Jennifer_*

Guest_Jennifer_*
  • Guests

Posted 27 October 2006 - 10:17 AM

Sweet,
Check into Restylane. I know that has worked on some.
Smiles,
Jennifer

#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 27 October 2006 - 10:55 AM

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.

#7 Guest_Jennifer_*

Guest_Jennifer_*
  • Guests

Posted 27 October 2006 - 11:19 AM

Why do we scar more than others?
Jen

#8 Sweet

Sweet

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 29 October 2006 - 02:37 PM

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)

#9 Claudia-DR

Claudia-DR

    Senior Bronze Member

  • Members
  • PipPipPip
  • 78 posts
  • Location:The Caribbean

Posted 30 October 2006 - 05:43 AM

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