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Maria R: Linear Scleroderma

I am as healthy as I ever was, except the line on my forehead
never disappeared, but it does not bother me in any way.

Orange One Day Lilly by Sherrill Knaggs, ISN Artist I was seven years old when my teacher at school noticed some redness on my forehead. My mum used to brush my hair from a middle partition to sides and sometimes would touch my forehead with the comb. That was our idea of how it appeared there. But before that I had ringworm on my face and everywhere else.

After a while, the red spot did not disappear, it grew brighter in color and into a red line and it lowered towards my nose.

I was taken to see many doctors. They obviously had no idea what it was. I then went to a bigger hospital where quite an old lady doctor and quite a knowledgeable one, as it turned out, told us it was linear scleroderma. My mother read books on the subject and I was told that my fingers would fall off at some stage. That was obviously not something any girl would look forward to. [Webmaster's note: Fingers do not fall off in any type of scleroderma, however the systemic form can severely affect the hands and lead to amputation sometimes.)

I have to admit I had quite a few bad headaches and fainted quite often, but generally I was very healthy. That probably was more caused by attending school in the opposite side of the city and music classes in the evenings with not much to eat in between. Now I am thirty. I hardly ever have any headaches and never faint. I am a bit of a porky though, and I still have to shed post-baby kilograms.

Anyway, my fingers are still with me, I am as healthy as I ever was, except the line on my forehead never disappeared, but it does not bother me in any way. I have a fringe to cover it up, even my husband does not know it is there as it is not as red as before. Some days it looks brighter than others, sometimes it is so pale you could not see it at all, only the skin texture is a bit different on it. After having it for twenty-three years, I am very much used to it. I do wish it was not there and would not mind to get rid of it somehow given even the smallest chance. Sometimes I wonder if the diagnosis was correct, but there is not one person to ask as I live in a different country now.

I worry if my son is going to inherit it and hope that he will not, but I am always checking his forehead for any signs of illness. I am a bit paranoid about it, I have to admit. I suppose any mother would be.

I would like to know if there is a chance it can be hereditary and is there any treatment, like laser, to get rid of the line.

To Contact the Author
Maria
Email: Withheld by Request
Story edited 04-19-06 JTD
Story posted 06-16-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
Linear Scleroderma
Types of Scleroderma
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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