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Patient & Caregiver Stories Main Menu
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Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Stories by Month Posted
January-April 2003
Jennie: Morphea Scleroderma I have spent six years with an ugly white rash on my neck. During those six years, the doctor experimented with different treatment...
Boo: CREST Scleroderma Finally in 1994, it was labeled as CREST syndrome, which is a form of systemic scleroderma...
Joy W: CREST Scleroderma Two months after my fortieth birthday, I was diagnosed with CREST scleroderma with Raynaud's...
Sue R: Hereditary Hemorrhagic Telangiectasia (HHT) HHT is a blood vessel disorder. I have spontaneous nosebleeds on a daily basis. It has been corrected in the past. I had dermal septoplasty surgery...
Sarah B: CREST Scleroderma I lost the tips of my baby finger and thumb. The other three fingers do not look too pretty, either...
Lisa W: Diffuse Scleroderma, CREST and Multiple Sclerosis I was recently diagnosed with multiple sclerosis (MS). That also took over a year to diagnose. My doctors tell me that I am one out of millions with this case of bad luck...
Alicia: Linear Scleroderma My doctor said the people who are looking at me and seeing the scars are the ones who need healing, and that I should pray for them...
Marko: Raynaud's and CREST Scleroderma (Canada) It began when I started to get extremely painful fingers and feet while playing hockey so I went to see a local dermatologist...
Dawna: Raynaud's with CREST? I am in my mid forties and was diagnosed with Raynaud's when I was about twenty-two...
Link to Maria's Russian Story Link to Maria's English Story Link to Maria's Russian Story
(Update) Raymond: Surviving Son of Scleroderma Patient But now another case has showed up in our family. My Uncle John, who is also a very wonderful man, was told this week that he also has scleroderma...
(Update) Linda E: Mother of En Coup de Sabre and Morphea Patient Can anyone who has been on prednisone tell me what happens when you get off it...
Patty S.:Localized Scleroderma, Pulmonary Hypertension and Sjögren's I have quit my job and reduced my stress a hundred percent. I am doting on my children and my husband...
Helen: Raynaud's Do I have scleroderma? Does it make a difference if you catch it early...
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...
Cindy E: Morphea Scleroderma I now have an area that grew much faster and larger than any of the marks I had as a child...
Vanessa: Linear Scleroderma My older sister found a way to cover up the nasty disease on my forehead. Bangs! It was a great idea...
Crystal R: Morphea One day when I was at school I was called to the office and asked if my parents were abusive...
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...
Wendy B: Mother of Daughter with Morphea and Vitiligo Does anyone else have Morphea and vitiligo? And what is the outcome?
Wendy L: CREST Syndrome In 1987 I was diagnosed with Non-Hodgkin's Lymphoma. I received highly toxic chemotherapy, and at a later date radiotherapy...
(Italiano) Lorenza: Sclerodermia Sistemica Variante CREST Dopo 27 anni il mio problema principale ?ostituito dalle calcificazioni enormi, estese sul 90% del mio corpo...
Khai: Mother of Diffuse Progressive Systemic Sclerosis Patient From that time until now, scleroderma has dictated our lives. The disease has attacked all lobes of the lungs on the right side...
Sara: Surviving Daughter of Scleroderma Patient This is the story of my mother who died on March 18, 1996, from complications of scleroderma...
Anna B: Morphea My Morphea started as bruise-like marks on the backs of my legs about three years ago, after I had just fought cervical cancer and won...
(Update) Lynn S: Diffuse Scleroderma and Pulmonary Hypertension I went to the doctor about a month ago and they do not recommend I ever have children, because of the Pulmonary Hypertension....
Lynne: Morphea Scler oderma One day when I was seven years old, my family and I went swimming in the local river...
(Italiano) Sabrina: Morfea Generalizzata Ho una nipote di 7 anni affetta da Morfea Generalizzata. La malattia si ?viluppata nell'estate del 2002...
D.M.: Son of Mother with Doubtful Diagnosis (Kosovo, Yugoslavia) I will do my best to help my mother. She is the only person I have in this world...
(Update) Trish: Spouse of a Diffuse Scleroderma Patient There have been a lot of changes in my husband's condition since last year. The arthritis is a real problem now...
(Update) Linda E: Mother of En Coup de Sabre and Morphea Patient The rheumatologist said that the line on Kate's forehead could move down her face or further into her head and cause bone deformities...
Susan Raby-Dunne: Surviving Daughter of Scleroderma Patient My mother lived a fairly full and productive life for over thirty years after her diagnosis. She danced with my father and they were accomplished ballroom dancers...
Linda E: Mother of Morphea Patient Five weeks later I noticed that the bruise was still there so we went to a pediatrician who referred us to a dermatologist...
Michael K: Interstitial Cystitis I was first diagnosed with Interstitial Cystitis (IC) when I was twenty-two years old...
Katie: Morphea I developed Morphea on my lower abdomen around the time I was twelve years old...
Kristen: Diffuse Scleroderma I originally thought I had CREST, but it has now been confirmed that I have Diffuse Scleroderma...
Debra K: Daughter of Scleroderma Patient (Canada) I wish that there was something I could give her from my healthy body...
David B: Raynaud's I am fifty-one years old and suffer with Raynaud's, bipolar affective disorder, high anxiety and phobias for which I am unable to take medication...
Go to December 2002 Personal Stories
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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Go to Stories by Date: May 2003
 
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