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May-December 2010

Kelly H: Linear Scleroderma I have linear scleroderma. It took years to diagnose, when I was around six years old; now I'm in my thirties...
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...
Moroni: Husband with Systemic Sclerosis My husband was diagnosed with this illness two years ago. It all began with a cardiac arrhythmia. I took him to a cardiologist who performed an echocardiogram, where he realized that his heart had some damage...
(Español/Spanish) Moroni: Esposa de Paciente con Esclerosis Sistémica Mi esposo fue diagnosticado con esta enfermedad hace dos años, se le manifestó con una arritmia cardiaca, lo llevé a un cardiólogo y éste le realizó un ecocardiograma y se dio cuenta de que su corazón presentaba una restricción...
Angel G: Systemic Scleroderma with Raynaud's Phenomenon I noticed that the middle finger on my right hand had turned so dark in color that it was practically black and I actually thought there was ink on it and tried to wash it off. Oh, if only the remedy had been so easy...
(Update) Mars: Scleroderma with Full Gastrointestinal Involvement (New Zealand) I think the last I may have mentioned is that I had a bad blood bug found in the portacath in my right shoulder. It was called pseudomonas which is a particulary nasty one...
(Update) Kristen: Diffuse Scleroderma I am getting happier with my life. I am now separated from my husband and that is a good thing actually...
Daphne M: Daughter of Limited Systemic Scleroderma Patient She has had symptoms of reflux, which has caused her to throw up every night for over ten years. Her hands turn blue and are very sensitive to hot and cold. She has been developing ulcers on her fingers too. She was admitted to CCU last week with difficulty swallowing and breathing...
(Update) Amanda: Diffuse Systemic Sclerosis Now I continue my scleroderma journey having collected myocardial fibrosis, heart failure and post capillary pulmonary hypertension to add to gastrointestinal issues, mobility issues, skin involvement, joint contractures, sclerodactyly, chronic pain and fatigue...
Matilda: Systemic Scleroderma (South Africa) I don't think there is a lot of support in South Africa and I would actually like to start a group where people with the same disease can meet and discuss how they cope with the illness...
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...
Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue...
Hazel: Morphea Scleroderma In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye...
Angela R: Linear Morphea Scleroderma I am twenty-five now and only have the two spots that I deal with pretty easily. I just hope it doesn't get worse...
Heather A: Scleroderma (South Africa) My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen...
Soledad: Diffuse Scleroderma with CREST I have tried to find different therapies and sometimes I feel fine, but then I have a crisis, I fall, pick myself up again, time and time again...
(Español/Spanish) Soledad: Paciente con Esclerodermia Difusa con CREST He tratado de buscar diferentes terapias y estoy bien por un tiempo pero vienen las crisis y caigo, y vuelvo a levantarme, una y otra vez...
Rebecca: CREST, Fibromyalgia, Sjogren's and Pulmonary Hypertension My finger has gangrene and the hand specialist says it needs to look like a mushroom before they will amputate...
Jules: CREST She has left me with no answers or expectations and I'm afraid my obsession will only aggravate my symptoms...
Bren: CREST Scleroderma I had three ulcers on my hands from Raynaud's. I had Botox injections for them, and by the next day they were gone...
Vivi: Facial Scleroderma (Linear/Morphea or Parry Romberg's) 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...
(Español/Spanish) Vivi: Esclerodermia Facial (Lineal/Morfea, Parry Rombergs) Me siento mal, quiero curarme, quiero ser bonita, me duele ver a mis primas bien y bonitas y yo no puedo descubrirme la cara porque me da pena...
Joyce T: Scleroderma with Pulmonary Hypertension My pulmonary doctor ordered a medication for the pulmonary hypertension (PH) but my insurance denied it...

2014 New Personal Stories

Sheri M: CREST Syndrome (Update) It has been three years since I've posted and I am happy to say I am still doing well...
More New Stories
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