Hello, my name is Vivi and I have had facial scleroderma since I was seven years old. At first I got a pimple on my face and my mom put something strange on it and it went away. After a while I got a spot on the right side of my face, close to my mouth, and it pulled my skin towards the side, also the skin around my nose. In this area the skin was thinner than in the rest of my face.
After three years I was taken to the Children's Hospital Federico Gómez in Mexico City. I was in treatment for five years but I had to leave. I have not been there in half a year and I don't think I will return.
I feel really bad, I want to get better, I want to be pretty, I am hurt when I see my cousins healthy and pretty and I can't stop covering my face because I am ashamed. I have been like this since I was a small child, and sometimes I have tried to do bad things to myself. I do not want to live this way.
I hope you will find a cure soon. I know a lot of kids like me are hurting, and we want to get better. We hurt when we see our parents suffering because of us, in hospitals, sleeping on the floor at our side, worried, and we cannot do anything.
It is also extremely painful and sad to have to put up with everyone else's mockery, that is more hurtful than the illness itself. I hope that you find a cure soon. I pray to God that he heals me and that a cure can be found. Thank you for listening, and let's keep our faith in God.
Email: Withheld by Request
Story edited 05/09/2010 JTD
Story posted 05/10/2010 SLE
Story Artist: Shelley Ensz
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
Vivi: Esclerodermia Facial (Lineal/Morfea, Parry Rombergs)
Acerca de la Esclerodermia
Emotional Adjustment: Coping
Emotional Adjustment Stories
Juvenile Scleroderma Stories
Parry Romberg's Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
Alba León is the ISN Translator for this page. She is studying international relations in Mexico City.
Reading Voices of Scleroderma Books: Diana Kramer.
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