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Patient & Caregiver Stories Main Menu
(English) Stories by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 ;2009
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Stories in English: E
Easter: Scleroderma My name is Easter, and I'm Iraqi. About 16 years ago I began my struggle with scleroderma...
Ed: Father of a Linear Morphea Patient A series of medications, steroids and creams has been applied, but Erwin's case seemed to be worsening...
Edith: MCTD with En Coup de Sabre/Parry Romberg's, Lichen Sclerosus, Rheumatoid Arthritis, Sjogren's My GP is fabulous, but at the end of the day it is not enough. I would be lost without people like you...
Edna S: Linear Scleroderma I am desperate because I know this is a deteriorating illness...
Elaine GH: Limited Systemic Sclerosis I tell everyone I meet about scleroderma. I have joined two support groups and bought all three editions of Voices of Scleroderma...
Elaine L: Scleroderma When I was about 20 years old, I started experiencing stomach problems and my fingers would turn a waxy white and feel so cold...
Eli: Sclerodermia and Raynaud's Syndrome (Italy) After thirteen years of suffering, he has given me a diagnosis and a cure, before it is too late, I hope...
Eliza: Daughter-in-Law of Morphea Patient (Poland) Who should we listen to? Who is right? Where should we look for help?
Elizabeth G: Diffuse Scleroderma I was fired from my job since I cannot work as I used to...
Elizabeth House: CREST Syndrome I find it hard to help people to understand what it is we are going through because they can only see the outside...
Ell: Morphea Scleroderma When I was seventeen I got three ridged circular marks on my arm, near the wrist...
Ellen: Interstitial Cystitis with Bladder Removal I feel like I have hit a dead end. My quality of life is worse than ever...
Elva: Mother of Diffuse Scleroderma Patient My son is unable to put on his own socks and shoes. He is very tired, and has tremendous pain...
Ely E: Linear Scleroderma (Italy) She took me to the dermatologist who discovered another spot that ran through my left leg from the stomach towards the back...
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...
Emily: Undiagnosed (Switzerland) I have had scleroderma for almost six years. For over four years doctors haven't said anything, surely because they do not even know what exactly is happening to me...
Emmi: Linear Scleroderma and Vitiligo My parents thought I was going to die, and doctors here in Finland did not really know what to do with me. There are not many scleroderma cases in Finland...
Erica: Mother of Daughter with Linear/Morphea Scleroderma She went there with one spot and now she has them all over both arms, one hand, her back, knee and thigh...
Erica R: Raynaud's Syndrome & Telangiectasia I noticed that in the middle of class my hands would go numb. I had to run out to my truck to turn on the heat...
Ewa: Mother of Localized Scleroderma Patient (Poland) Only sometimes when he plays in the yard I can hear his friends asking: "Why do you have such leg?"
Stories in English: F
Faith Rumph: Eosinophilia-Myalgia Syndrome (EMS) I am one of several thousand Americans who became ill from ingesting contaminated over-the-counter L-tryptophan, an amino acid dietary supplement...
Faye: Morphea Scleroderma At the age of about six or seven, I developed what looked like a bruise on the front of my left thigh. It started off as a small purplish spot...
Federica: Morphea I have had localized morphea in my lower back for two years...
Fionna: Undiagnosed Scleroderma/Raynaud's My problems began in 1999, after a particularly stressful twelve months, at age thirty-six...
Flora: Systemic Scleroderma with Bronchial Allergic Asthma (Italy) I am a young woman aged 23, and in August of this year (1999), I was admitted to Saint Anna Hospital in Ferrara and diagnosed with systemic sclerosis...
Fran: Undifferentiated Connective Tissue Disease (UCTD) After years of suffering from a long list of complaints, I was diagnosed with UCTD...
Francia: Undiagnosed I have a lot of pain in the back of my neck and problems with my throat when I eat...
Franco: Sjögren's Syndrome (Italy) My name is Franco, I am 57 years old, and three years ago I was diagnosed with Sjögren's Syndrome...
Fred: Future Spouse of Scleroderma Patient I met a girl five months ago and immediately fell deeply in love with her...
Fykah: Systemic Lupus Erythematosus (SLE) I am recently diagnosed with Lupus, yet some complications are still under-diagnosed...
Stories in English: G
Gail: Undifferentiated Connective Tissue Disease (UCTD) They found I had Interstitial Cystitis, a positive ANA, and gastrointestinal dysmotility...
Gaynor: Morphea and Possible Systemic Sclerosis I was diagnosed in 2003 with morphea. It began as a bruise-like patch on my upper right arm...
Gazea: Diffuse Scleroderma I would like to at least try to suggest a small ray of hope for other sufferers of diffuse scleroderma...
Gena P: Morphea I was diagnosed with morphea at the age of twenty-seven. It was a long process for diagnosis...
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...
Gerald: Spouse of Scleroderma Patient She would often comment how she wished they could figure out what was wrong, give her the pill to fix it, and she would feel fine again...
Gerry Fitzpatrick: Eosinophilic Fasciitis My hands have become very weak and with all my other medical problems, this one is really depressing me the most...
Gertie: Systemic Scleroderma without Skin Involvement or Raynaud's She looked thoughtful for a moment, then quietly asked "Is there hope?"
Gianna: Progressive Systemic Sclerosis (Italy) Hello, I am writing this story on behalf of my mother, who is not very good at using a computer...
Gillian: Eosinophilia-Myalgia Syndrome or Eosinophilic Fasciitis My arms and legs still feel really hard and are very inflexible. I can't fully open my hands or point my toes...
Gina: Morphea or Linear Scleroderma I really try to put it out of my mind and be thankful that it is not systemic...
Ginger: Generalized/Linear Scleroderma After analyzing all the test results and my medical records the neurologist attributed the muscle atrophy to the linear scleroderma...
Gingy: Localized Scleroderma (Italy) In September 2006 I was told that I might have localized sclerodermia after I discovered dark marks and my skin hardened in my left forearm...
Gio: Progressive Systemic Scleroderma (Italy) I have been suffering from scleroderma since 1990...
Giovanna: Sister of Morphea Scleroderma Patient My sister (who is 35 years old) has had Morphea for over 10 years now...
Gipi: Raynaud's, Scleroderma (Italy) I'm a 53 year old woman. When I was 21 my illness began, my fingers turned white and I had pain in my bones...
Gordon: Undiagnosed and Raynaud's I am a forty year old male and I am quite certain I have scleroderma even though I have not yet been diagnosed...
Grace: My Mother's Fight Against Pulmonary Fibrosis I lost my mum eight months ago, after a two-year fight against pulmonary fibrosis...
Greg: Diffuse Scleroderma and Lung Transplant Patient I asked Dr. Frank C Arnett to see if I was a candidate for a lung transplant...
(English) Stories by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z
New Personal Stories
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...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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