Hello! My name is Emy and I am twenty-six years old. When I was nine I noticed a small lesion, the size and shape of a coin in the temporal side of my skull. As time went by I began losing the hair in the area. I thought I was going bald, so I decided not to push it further, nor ask my parents.
At twenty, I noticed yet another lesion, this time a deep gash in the right coronal area of the skull. I then became very afraid of going completely bald, so I decided to go to the dermatologist. The diagnosis was localized scleroderma, with a prescription for particular pain that by then had become more frequent. I later stopped the medication since the pain was gone, and I did not go back for medical check-ups.
Nowadays, the lesions are compacted and I have constant headaches. For as long as I can remember I have always felt exhausted and I do not know what to do to feel better. I have decided to go back to the doctors, but I would like to know whether they can really help me calm the symptoms for the scleroderma that I suffer from or whether going to the doctor will only help me become conscious of an illness that I swore I would forget.
What is the average of local scleroderma cases that progress on to something serious? Can I lead a relaxed life, forgetting about scleroderma without having to always worry about symptoms? Perhaps what I think is a bit crazy, but I talk from the experience I have had with this illness, am I supposed to live every day thinking about it? Is the probability of worsening high?
I am sorry I am perhaps only speaking about my own case, and I am leaving aside the cases of people that cannot forget that they have this illness, but I want to avoid obsessing about it and just keep it at a distance. I want to feel healthy and full of life, but I know that I can share some of the fears and symptoms.
We know there is no cure, and I am very aware that even if I want to forget about scleroderma, it is still there. What I would like to know is how damaging for my health it would be if I just tried to ignore the illness.
Emy Email: [email protected] Story edited 02-19-2010 JTD Story posted 04-30-2010 SLE Story Artist: Shelley Ensz Story Translator: Alba León Story Editor: Judith Thompson Devlin |
LINKS Español/Spanish: Emy: Esclerodermia Localizada Acerca de la Esclerodermia English: Emotional Adjustment Juvenile Scleroderma Juvenile Scleroderma Stories Linear/Morphea Scleroderma Linear/Morphea Stories Medical: Diseases and Symptoms Scleroderma Experts (Worldwide) Sclero Forums *Online Support Group!* Symptoms of Systemic Scleroderma Types of Scleroderma What is Scleroderma? |
ISN Translator and Editor: Alba LeónAlba 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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