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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
Nina: Fibromyalgia, Raynaud's, Limited Scleroderma/CREST That is when I found ISN! The volume of reliable, informative, trusted information that I found on this site completely overwhelmed me...
Wade: Scleredema vs Scleroderma At first look, my doctor thought I might have scleroderma, but after doing blood work, they said my tests came back negative...
Mendyon: Mother-in-Law of CREST Patient Unfortunately, as I sit here writing this letter my husband and I are faced with some grim circumstances. She is currently losing her battle to CREST syndrome...
Rhonda L: Systemic Scleroderma I have recently been diagnosed with sclerodema, and am still trying to wrap my brain around this...
Joan B: Scleroderma and Raynaud's One day in 2000, I was raking leaves and my hands were really cold. I went into the house in pain and my hands looked like I had frostbite...
(Update) Donna: CREST, Raynaud's, possible Fibromyalgia It is now one and a half weeks since I had the iloprost infusion and I am very happy to say that my pain has gone in my hands...
Alina: Scleroderma CREST Syndrome This site is very helpful as I have been reading articles of people with my condition and can relate to what they are going through...
Star S: Morphea and Systemic Scleroderma I was diagnosed with morphea at age seven. Now at age thirty-three, I have recently developed systemic scleroderma with gastrointestinal manifestations, Sjogren's syndrome, inflammatory arthritis, malabsorption...
Merry: Deep Morphea They diagnosed it as localized morphea however they did not treat or elaborate...
More New Stories: October 2008
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