I am a nineteen-year-old Swiss girl. I have had scleroderma for almost six years. For over four years doctors haven't said anything, surely because they do not even know what exactly is happening to me.
At first the spots appeared in my thighs, moving to the inside of my legs. The area where the spots were located turned bright with the light, after that the skin changed, it became full of striations and very soft, instead of turning hard and dry. I think this is why doctors haven't diagnosed me with an illness yet.
I did a year of a penicillin treatment and it seemed like the spots had disappeared. They told me that I wouldn't get them back for a couple of years at least. But after the treatment, the spots reappeared on the inside of my arms, larger and more of them. Now the spots have extended to my thorax and those on my arms are now hypersensitive and itchy.
Throughout the years I have changed doctors more than once and it wasn't until very recently that they told me it seemed, from my blood tests, that I had 'probable scleroderma'. I do not know the form, because they simply told me, "Do not worry, you have the mildest form, you will not die of this and that is for sure." What form it is I don't know, they didn't want to run more tests. I can only think it is the localized form, thanks to the information on this website. But I am still in doubt. The cure they prescribed is time: I have to wait until it stops on its own.
I do not have the right to criticize, because I know it is difficult for a doctor to diagnose an illness that he is not an expert in (I do not hold a grudge against him), and I do not have the right to complain about my situation, because I am still alive and I know there are people who have worse problems than mine. But I am very tired of the uncertainty, and I will not go to a doctor regarding scleroderma, unless I find one who informs me of everything.
I ask of the people who, just like me, don't know for sure what their condition is: don't be afraid, you have a right to know, don't stay in the shadows because often that destroys truth even more.
In the end I have accepted my supposed illness, I do not feel ashamed and I continue on living my life. I am currently in my first year of medical school in Laussane, and I want to be able to help one day.
Email: Withheld by Request
Story edited 03-12-06 AL
Story posted 05-02-06 SLE
ISN Senior Artist: Sherrill Knaggs
Story Translator: Alba León
(Italiano) Emily: Non Diagnosticada
(English) Difficult Diagnosis
(English) Types of Scleroderma
PDF Brochure: What is Scleroderma?
Alba León is the ISN Translator for this page. She is studying international relations in Mexico City.
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