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Catherine: Mother of Linear Scleroderma Patient

My mouth does not close as the lips cannot cover my protruding top jaw, and there is little saliva flow over these teeth.

Birdhouse at Gallteria by Shelley Ensz My linear scleroderma started on my left cheek at the age of four and by the time I was eight, that side of my face was quite deformed. The growth of my left jawbones were affected; hence, the removal of teeth when I was sixteen in preparation for surgery. My mouth does not close as the lips cannot cover my protruding top jaw, and there is little saliva flow over these teeth.

From what I remember, the proposed surgery was to break my top jaw and make it fit my mouth without touching the skin that had been affected by the scleroderma. This skin is now quite soft. This surgery, I presume, would also improve my bite. At the moment, my jaw does not meet and chewing is difficult.

Now the doctors seem to be reticent to cut into the scleroderma skin to puff out my cheek to make it look normal. My family and I are not critical of this or the five years on the waiting list, but at twenty-three, I would like something done.

I would love to hear from anyone who has linear scleroderma or had reconstructive facial surgery for it, or who is knowledgeable about such procedures.

~ Update 5-24-03 from Emma ~

I have had linear scleroderma since I was four years old on the left hand side of my face which made my face look crooked.

On December 2, 2002, at the age of twenty-six, I had an operation to make my face look similar to everbody else's. My surgery was done at Middlemore Hospital in New Zealand, by an oral surgeon called Lance West. He broke both of my jaws and pulled the top one back and brought the bottom one up to meet the top one, so now my face looks straight and I can close my mouth without my teeth sticking out.

To Contact the Author

Catherine and Emma
New email address needed 08-06-09 SLE
Old Email Prefix: emwalkinton
Story posted 1-1-2000
Update posted 5-24-03
Story edited VH1: JTD 9-4-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Linear Scleroderma
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)