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Stories by Month Posted
August 2007
Jon T: Eosinophilic Fasciitis I am stumped as to the possibility for me to return to normal duties at work, and what the normal prognosis for someone with this disease can expect?
Barbara H: Generalized Essential Telangiectasia About five years ago some specialists at St, Vincents Hospital had a symposium and I was one of the subjects but they did not have anything to assist me. Laser could help but was very expensive...
Ginger: Generalized/Linear Scleroderma After analyzing all the test results and my medical records the neurologist attributed the muscle atrophy to the linear scleroderma...
Mark: Systemic Scleroderma It wasn't until 2003 when I finally saw a doctor. They told me I had scleroderma and that I would live maybe five years...
Phyllis C: Scleroderma How many new cases are coming up now from people that were at the World Trade Center? I was there along with co-workers that are very ill now...
Laura H: Mother of Son with Linear Morphea What started as a bruise in his forehead, has come down to his nose, and his forehead has sunk a bit...
(Español/Spanish) Laura H.: Morfea Lineal Al principio no le dí mucha importancia porque pasaba el tiempo y seguía igual, pero ahora pasado un año todo ha cambiado...
Lindsey Z: Morphea Scleroderma I was self conscious in fear that others would care, or find me ugly because of it...
(Update) Laurie (Bioteach): CREST Syndrome I suffered a severe depression including hospitalization and electro-convulsive therapy...
Georgina: Mother of Child with Morphea The only thing I know about it is what her doctor told me, namely that it has no cure...
(Español/Spanish) Georgina: Madre de Paciente con Morfea Lo único que sé es que es una enfermedad incurable, por que es lo único que me explico su doctor...
Caroll: Morphea I would like to know from someone who has children, as to whether my daughter can develop the same thing...
(Español/Spanish) Caroll: Morfea No se si alguien tenga hijos porque me preocupa demasiado saber que mi hija pueda desarrollar lo mismo...
New Personal Stories
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
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Go to New Patient Stories: July 2007
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