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Ila: Localized Scleroderma, En Coup de Sabre


Peach Rose by Shelley EnszHello, I am a thirty-one-year-old girl. When I was three years old I was diagnosed with scleroderma en coup de sabre, since I had a large depression in the center of my forehead that extended vertically from the nose, through my forehead and ending in my scalp, and a smaller one in my back which is thicker.

I was taken for a treatment to the Gemelli di Roma hospital, first with Prof. Fabrizi, then for a few years with Prof. Rusciani and Prof. Venier. Today, with some years in hindsight, and an interminable treatment cycle based on trilastene 100, piascledine and vitamin E, after not being able to have sun in the affected areas (I get protection from total protection sunscreen), it seems as if the illness has stopped, or to put it in a different way "calcified", like they told me in my last doctor's appointment.

The disfiguring sign however has remained. In the beginning they told me that perhaps I could attenuate it with a collagen implant (filler) while the dark spot could be reduced with laser. But on my last appointment, another doctor, also from the Gemelli, told me that it would actually be better to have no intervention in the area, because there would be a possibility of the pathology becoming acute again.

Therefore I ask: whom should I listen to? Is it true that nothing can be done about this ugly aesthetic defect? And furthermore, if I have a five month old baby, what are the possibilities of him inheriting this pathology?

Thank you for answering.

To Contact the Author

Email: [email protected]
Story edited 04-22-09 JTD
Story posted 05-14-09 SLE

Story Artist: Shelley Ensz
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
Ila: Sclerodermia Localizzata a Colpo di Sciabola

Causes of Scleroderma: Genetics
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ISN Translator and Editor: Alba León

Alba LeonAlba León is the ISN Translator for this page. She is studying international relations in Mexico City.

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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