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Stories by Month Posted
October 2007
(Update) Kristen: Diffuse Scleroderma I didn't think that I would make it through even the first five years. If you read the medical books, they are all full of doom and gloom. But, hey, here I am...
Sarah H: Linear Scleroderma When I was very young, two or three years old, my mom started to notice that the top of my scalp was changing...
Susan L: Diffuse Scleroderma I first noticed the swelling in my hands and feet shortly after my daughter was born in 2005, and thought that it was post-pregnancy fluid...
Emma C: Living with Localized Morphea Some of my earliest childhood memories are of my mother taking me to see doctors who were baffled by the strange marks on my back...
Julie H: Sjogren's Syndrome, Polymyalgia Rheumatica, and Peripheral Neuropathy I am in pain all of the time, have trouble sleeping, and if I do not take a muscle relaxer every night, I will not be able to turn my head the next day...
Francia: Undiagnosed I have a lot of pain in the back of my neck and problems with my throat when I eat...
Allen's Mom: Son has Scleroderma With his tightness of skin he has a very hard time bending, walking up the stairs and for the most part he cannot walk for more than a few minutes without his legs giving out...
Irina: Polymyositis When I was nine I had my tonsils removed by surgery. Immediately after the operation I experienced muscle weakness and I had no strength to do everyday things as simple as walking or even getting up from bed...
Joshua: Morphea My morphea doesn't look like most. In fact, it looks almost star-shape, mostly because it is in lines and not a solid shape. It is not hard either, so my fear is that it could be keloid morphea...
(Update) Jill K: Lupus with GAVE (Watermelon Stomach) I have now been diagnosed with Mixed Connective Tissue Disease (originally I was told I had Lupus.)...
(Update) Doni: CREST Syndrome I had my finger amputated in August, 2005, and then again in August 2006. The first time they didn't take enough off the finger, so it abscessed again...
Tata P: Diffuse Scleroderma I am thirty-two years old, and I have been suffering this illness since I was nine...
(Español/Spanish) Tata P: Esclerodermia Difusa Hola, tengo 32 años, y padezco esta enfermedad desde los 9...
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: September 2007
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