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Stories by Month Posted
February-August 2008
Donna: CREST, Raynaud's, possible Fibromyalgia I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998...
Jessica G: Parry-Romberg Syndrome By the time I was about five years old, the disease had already disfigured my left side drastically. I have had over fifty operations and surgical procedures for Romberg's....
Leslie R: Scleroderma, Vitiligo, Lupus, Anemia, Hypertension and Type 2 Diabetes He told me that I have scleroderma and explained what this disease is about. After suffering so long I finally got some answers...
Jaci: MCTD and Autoimmune Hepatitis Out of fear of going back to the doctors, I tried just to live with it, whatever it was. What I found strange was that nobody seemed to noticed how terrible I was feeling, not even the doctors...
Heather: Vitiligo, Hypothyroidism, and now Linear Morphea I am not too concerned about the other two conditions since there really is nothing you can do about the vitiligo, and the thyroid is under control. The morphea is what is bugging me...
Amanda: Diffuse Scleroderma Systemic Sclerosis I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007...
Jennifer M: Mom of Linear Morphea Patient Almost the minute that the doctor walked into the room she knew what it was. The first words out of her mouth were, "That's linear morphea"...
(Update) Sherri M: CREST Syndrome This seems to be progressing as time goes on. But so far I still have no internal involvement and my lungs are doing fine...
Theon: Scleroderma and Pneumothorax This is very hard for me, because I was a very active woman, and then suddenly I am totally and completely disabled...
(Update) Bill: Diffuse Scleroderma When I quit drinking milk, not only did the cough from the pneumonia lessen but my chronic night cough disappeared entirely within a couple of days...
(Update) Rosebud: Diffuse Scleroderma with Raynaud's, Diabetes, Depression and Anxiety Hopefully this update will touch all of you who are in doubt or pain or just on the edge of giving up please always remember there is a light at the end of the tunnel...
Sue D: Diffuse Scleroderma Pain developed in my hands, then I noticed pain in my knees, then my shoulders, down my back, elbows, hips, feet...
Doris: Morphea I was diagnosed with morphea in 2006. It started with itching that would not stop and now after a year and a half later it is still itching and painful...
(Update) Maggie M: Lichen Sclerosus et Atrophicus and Generalized Morphea After having UV light therapy all summer, my skin started to improve slightly in July, and I stopped treatments the last part of October 2007...
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: January 2008
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