Where to begin? I have linear scleroderma and I have had it for about twelve years. Now I am twenty-five so I discovered that I had it when I was very young, just thirteen.
My mother realized that I had a dark surfacing line on my stomach that had some pus. She took me to the dermatologist who discovered another spot that ran through my left leg from the stomach towards the back. Not convinced, he sent me to a specialist. This doctor looked at everything, and analyzed the spot, but he first did a biopsy to check the subcutaneous tissue, and right there and then told me to consider myself lucky, since the illness was in abortive phase. That is, the spots would remain, but no other problems, in theory. He told me it was a strange disease that would be cured with very expensive therapy.
Just today twelve years have passed, and there is always a dark mark that has faded with the years nonetheless. Perhaps my veins are more pronounced than those of a normal person, but I am fine. I am not giving up, it doesn't matter how dangerous this illness is.
I would like to add something to the discourse on causes of scleroderma. My mother, when pregnant, worked until the eighth month at a dye factory for wool, therefore there were chemicals around her. I cannot even explain the smell to you! If, like I have read here, a reason for it can be chemicals, I would like to reflect on this with you.
Ely Email: [email protected] Story edited 07-14-09 JTD Story posted 07-14-09 SLE Story Artist: Shelley Ensz Story Translator: Alba León Story Editor: Judith Thompson Devlin |
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Alba León is the ISN Translator for this page. She is studying international relations in Mexico City.
Judith 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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