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Sclerodactyly Personal Stories

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer

Amanda: Diffuse Scleroderma Systemic Sclerosis I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007…

Betty Fults: CREST Scleroderma I would like to talk with someone that has feeding tubes also. Maybe that will help me…

Beverly: CREST Scleroderma I was overtired and needed naps in the afternoon, pain was slowly getting the better of me and I finally went to the doctor…

Bill: Diffuse Scleroderma I was relieved to have a label for my condition but the doctor was not very reassuring telling me that there was no effective cure or treatment…

Claudia: Systemic Scleroderma Nature is wise, no doubt about it, when something is wrong with our body we have to pay attention…

Craig R: CREST Scleroderma I had my first scleroderma symptoms at age twenty-two, which included severe Raynaud's with some ulceration and tissue loss…

Deborah T: Scleroderma No doctor seems to help me. My doctor just says I have so many problems its hard to know what to do…

D.M. Hoffe: Progressive Systemic Sclerosis (Scleroderma CREST) After an endoscopy it was discovered I had a Watermelon Stomach…

Dawn M: Linear/Systemic Scleroderma My family and I were informed by the doctors, that the localized/linear form of scleroderma that I was diagnosed with, would never progress into the potentially fatal, systemic form…

Jay: Scleroderma and CREST When I was fifteen or so, I noticed that my fingertips were starting to get very sore…

Judy Dee: Diffuse Scleroderma My skin began to harden and turn a shade of brown…

Julie T: Surviving Daughter of a Diffuse Scleroderma Patient Our family deals with most difficult situations with laughter and humor, even in the most trying times…

Karen M.R.: Diffuse Scleroderma and Fibromyalgia I was so glad she was there, because I sort of went into shock when the doctor said she was going to start me on chemo treatments…

Katia C: Sister of a Scleroderma Patient (Italy) She is in the acute phase of the illness, and she has a hardened skin, third degree, that has affected her hands, arms, chest and legs…

(Italiano) Katia: Fenomeno di Raynaud con Sclerodermia Diffusa (Italia) In conseguenza ha una crisi renale sclerodermica che gli ha alzato la presione e gli ha provocato una ischemia…

Kristen: CREST Scleroderma I thought I was going crazy. I did not know whether to cry over the diagnosis or feel relieved that I was not crazy…

Lisa V: Diffuse Scleroderma and Raynaud's When I first got sick, I thought I was dying. My fingers started hurting really bad…

Manu: Daughter of Patient with Systemic Scleroderma (Italy) I recently lost my father, and in his last moments he suffered very much. He was affected by systemic scleroderma that began with simple inflammation of his hand in November of 2006…

(Italiano) Manu: Figlia di Padre Malato di Sclerodermia Sistemica (Italia) Ho perso mio papà una settimana fa, dopo atroci sofferenze. Era affetto da sclerodermia sistemica iniziata con un banale gonfiore di una mano nel novembre 2006…

Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end…

(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia…

Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success…

Naomi: Systemic Sclerosis and Pulmonary Fibrosis My doctor is astonished of my attitude considering I have Raynaud's, my fingers are curling up and I have lost my nails, pulmonary fibrosis…

Neelam: Systemic Sclerosis (India) In December 1998 my right pointer finger started becoming blue and was hurting a lot…

Olga: Difficult Diagnosis Recently I came across sclero.org while researching my illness that has not been recognized neither in my native country nor in Italy, where I moved twelve years ago to escape from cold winters which have destroyed my skin…

Peter: Burn Survivor with Scleroderma My left hand had contracted so much that I had to wear a protective piece of plastic on my palm to prevent my fingernails growing through the skin…

Rosebud: Diffuse Scleroderma My hands are the worst. They are completely swollen, red, itchy, with burning sensation and in pain constantly…

Rosie: Limited Systemic Sclerosis (Australia) Some of my symptoms may not be due to limited scleroderma, however most of these symptoms have appeared since my diagnosis…

Sheila Z: Scleroderma I would like to first say that this site has been a great help for me to understand what is happening to my body and my life…

Sherrill: Diffuse Systemic Scleroderma (New Zealand) I could no longer walk, due to knee contractures. My hands resembled claws. I had elbow contractures and neck contractures, and could not straighten my arms…

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…

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…

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…

Trish: Spouse of a Diffuse Scleroderma Patient My husband had the surgery and his fingers are now fused into an open position. He will have the other hand done in June, at the Johns Hopkins Bayview Hospital…

Yvette: Undifferentiated Connective Tissue Disease (UCTD) and Thyroid Cancer For now, I have accepted that the diagnosis of my core problem is not important. The way I choose to deal with it is…

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