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Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

Stories in English: H

Hailee Vale: MCTD but Now Undiagnosed I still do not have any proper answers. I have my own theories as to what went wrong and I am waiting to see a rheumatologist...
Halina: Mother of Daughter with Morphea (Poland) My daughter was four, when I discovered a small spot on her left foot...
Hamza: Linear Scleroderma I would really like to know whether there are any athletes who overcame severe linear scleroderma in their leg...
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...
Heather: Vitiligo, Hypothyroidism, and now Linear Morphea I am not too concerned about the other two conditions since there really is nothing you can do about the vitiligo, and the thyroid is under control. The morphea is what is bugging me...
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...
Heb: Scleroderma I am thirty-one and newly diagnosed. I am still trying to figure it all out...
Heidi: Difficult Diagnosis of UCTD Do these symptoms resemble the beginning symptoms for others who have gone on to be diagnosed with scleroderma?
Helen: Raynaud's Do I have scleroderma? Does it make a difference if you catch it early...
Helen P: CREST Scleroderma I was diagnosed ten years ago when the symptoms kicked in with a vengeance following a very traumatic personal tragedy...
Henry: Eosinophilic Fasciitis The disease then grabbed hold and started spreading like wild fire...
Hilde: Scleroderma, Lupus, Raynaud's I was diagnosed with lupus, scleroderma and Raynaud's in 1997. I have been through hell and back several times...
Hope: Linear Morphea My mom took me to the doctor and for three months he treated it as ringworm...
Stories in English: I
Iceback: CREST or Limited Scleroderma Never having heard of scleroderma, I never really asked any questions when he told me and went home to look it up on the Internet...
Iko H: Limited Systemic Sclerosis (Belgium) I am fifty-one years old and in May 2011 my diagnosis of scleroderma was confirmed. I am studying for horse veterinarian and am in my last year...
Ila: Localized Scleroderma En Coup de Sabre (Italy) It seems as if the illness has stopped, or to put it in a different way "calcified", like they told me in my last doctor's appointment...
Iona: Parry Romberg Syndrome (Romania) That morning when I woke up I a rash under my right eye. It was about 1 centimeter, but I thought it was because I cried the night before so I did not see it as a problem that time...
Iman: Morphea When it got too hot and I would take off my jacket, people would be so disgusted with my arm. I would always cry about it...
Ingrid: Daughter of CREST and Overlap Patient (Germany) Maybe there is someone who has a similar or the same problem and this person could write to me. The doctors cannot help my father...
(Deutsche) Ingrid: Vater das CREST Sydrom sowie Overlap Syndrom Vielleicht kann mir jemand schreiben der das gleiche...
Irina: Polymyositis When I was nine I had my tonsils removed by surgery. Immediately after the operation I experienced muscle weakness and I had no strength to do everyday things as simple as walking or even getting up from bed...
Iris: Family History of Scleroderma Is there anyone else who feels that their family has a history of scleroderma?
Irja: CREST, Limited Scleroderma I'm a 34-year-old woman from the land of Santa Claus, Finland. Ive had CREST since 1998...
Isabo: Raynaud's and Systemic Sclerosis (Italy) About a year ago I got diagnosed with Raynaud's, since the tip of my fingers had withered...
Ivone: Morphea My dermatologist has said that this has no cure, but that I am stable...
Stories in English: J
Jaci: MCTD and Autoimmune Hepatitis Out of fear of going back to the doctors, I tried just to live with it, whatever it was. What I found strange was that nobody seemed to noticed how terrible I was feeling, not even the doctors...
Jackie: Scleroderma, CREST, and Pulmonary Hypertension We were identical twins, and she died in 1988 from kidney failure...
Jackie J: Localized Scleroderma Initially I noticed a dark patch on my left forearm and the front of my left thigh...
Jackie S: Overlap Syndrome For as long as I can remember I have had terribly dry skin and a very hoarse voice with dry mouth...
Jacqueline: Morphea Scleroderma I have multiple grayish/brown/ and white spots on my sides, stomach, and back,,,
Jacquie: Diffuse Scleroderma I am fifty-six years old and I was diagnosed with systemic scleroderma in November of 2003, right when menopause hit...
James S: Son of Watermelon Stomach Sufferer Last year, my mother was diagnosed as a celiac. Since then a number of other problems have risen to the surface...
Jamie: Surviving Spouse of Progressive Systemic Sclerosis Patient My husband Jerry, age 35, was diagnosed with scleroderma in January 2000...
Jan: CREST Syndrome Set goals, maybe just short ones, but set them.My first goal was to be here to see my youngest son graduate from high school...
Jan L: Linear Scleroderma and Vitiligo I was not ever overly concerned with my looks, so I really did not pay that much attention to it...
Jane D: Linear Morphea (En Coup de Sabre) In August 2006, I found another dent in my head, but this one was deeper and longer and just to the left of the first one...
Jane S: Mother of Morphea Scleroderma Patient In 1990 my healthy and bright six-year-old daughter complained of her right foot itching and hurting...
Janet: Mixed Connective Tissue Disease I have just been diagnosed with Mixed Connective Tissue Disease (MCTD), lung fibrosis, Raynaud's and sicca (dryness) symptoms...
Janet Q: UTCD or MCTD I also experienced new symptoms; joint pain, muscle aches, headaches, very painful carpal tunnel syndrome in both hands, back and neck pain, the list grew on and on...
Janice: Daughter of Scleroderma Patient (Brazil) I have lupus and my mom has scleroderma. She is sixty-two years old and does not know that I am trying to understand her illness better...
Janice E: CREST/Fibromyalgia At some point I came to the realization that what I was feeling just could not be normal. By this time my hands were swelling...
Janie: Morphea And it scares me because the feeling I have on my back is weird...
Jason: Linear Scleroderma I have recently been diagnosed with Raynaud's as well, have had gastrointestinal difficulties more common to systemic forms, and have witnessed these lesions grow and deepen rather than decrease in size...
Jason G: Morphea I went to see a rheumatologist, who unfortunately originally told me that morphea has been known to lead to systemic sclerosis. Obviously, he was wrong about this, and later admitted that he spoke too soon...
Jay: Scleroderma and CREST When I was fifteen or so, I noticed that my fingertips were starting to get very sore...
Jean L: Scleroderma I have been under Dr. Wigley's care at Hopkins in Baltimore. Currently I am having a problem with severe itching and burning...
Jen: Scleroderma Morphea About six weeks ago, I hit a low when I discovered new spots on my arms and neck...
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...
Jennifer: Surviving Daughter of Overlap Syndrome Patient This letter was written by my dad and was read at my mother's memorial service...
Jennifer B: Morphea Scleroderma I am now twenty-four years old. I still have the permanent "bruise" on my left knee...
Jennifer Foster: Eosinophilic Fasciitis (Ontario, Canada) My husband has been extraordinarily accepting of the rapid deterioration of my once charming and petite figure...
Jennifer Gayton: Mother of Morphea Patient Last May we noticed what looked like a bruise on our daughter's stomach...
Jennifer M: Mom of Linear Morphea Patient Almost the minute that the doctor walked into the room she knew what it was. The first words out of her mouth were, "That's linear morphea"...

Jennifer Weldon: Systemic Scleroderma/Stem Cell Transplant Patient I was put on a ventilator and complete life support. I had five open heart surgeries...

Jenny: CREST Scleroderma My symptoms started to appear over ten years ago, but I was only recently diagnosed...
Jenny H: Eosinophilic Fasciitis My legs started changing appearance to a mottled red and white color, and looked like they were made of plastic...
Jenny M: Morphea Scleroderma I was told it was a fungus, vitiligo, and then that it was lichen sclerosus...
Jenny S: Morphea, etc. After a biopsy, I was diagnosed with morphea at age fourteen. A small spot, size of a quarter on my lower back that progressed to the size of two of my hands...
Jeri-Lou: Watermelon Stomach Since then I have had nine laser surgeries, two units of blood and six iron injections, which have only managed to bring my blood count up to a 9 count...
Jerri: CREST Syndrome I was twenty-one years of age when I first noticed that my fingers, toes and lips were turning colors...
Jerry: Systemic Scleroderma After twenty-five years in the medical field I thought I had seen and heard it all...
Jess: Linear Scleroderma (Cairo, Egypt) It's been twenty years of a battle with the unknown. I am twenty-six and I have linear scleroderma, and I have been reminded of it every single day for twenty years...
Jessica: Morphea I know I will not let this morphea stop me. I am going to continue living life to the full like any other twelve-year-old girl...
Jessica G: Parry Romberg Syndrome By the time I was about five years old, the disease had already disfigured my left side drastically. I have had over fifty operations and surgical procedures for Romberg's....
Jessica M.: Mother of Linear Morphea Patient About eight months ago my daughter developed a dark circle on her leg. It looked like a deep bruise, but we let it go. It never went away...
Jessica N: Eosinophilic Fasciitis Sometimes I still worry about myself and how my parents are dealing with this...
Jewell: Diffuse Progressive Systemic Sclerosis When I think back, I had been getting sick for a long time. I just did not know it...
Jill: CREST Scleroderma and Sjögren's I could not face being in or visiting a hospital so I discharged myself from his care. I decided that I have lived with it this long so will simply get on with it again...
Jill K: Lupus with GAVE (Watermelon Stomach) My hemotologist and GI specialists are very supportive but I am so frustrated at how little any one seems to know about GAVE disease...
Jim: Scleroderma I have already been found fully disabled by Social Security for my ankle alone, but this isn't enough for the good folks at the insurance company...
Jo: Mother of a Child with Morphea Scleroderma Last year we noticed that our daughter had a blotchy, purple/red "rash"...
Jo H: Systemic Sclerosis I am eagerly awaiting an appointment with Dr. Korn at Boston University in a few weeks...
Jo P: Limited Scleroderma and Raynaud's I could barely walk ten feet without needing to sit down...
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...
Joan Elston: Systemic Scleroderma, Sjögren's, and Fibromyalgia I am sixty-one years of age and live with my husband Bryan in Durban South Africa...
Joan Stovall: Scleroderma Dallas, Texas I may have scleroderma, but it does not have me...
Joanna: Morphea The first dermatologist said I had more spots than he could find on any one person in his medical books and treated me with a steroid tape that I had to cut into the shape of each spot on a daily basis...
Joanne: Diffuse Scleroderma (Now in memory of Joanne by Lis) My hands became very swollen and I was unable to make a fist...
Jody: Fibromyalgia/Difficult Diagnosis In Sudan, I was on IV for heat stroke and food poisoning. And in Thailand, at the end of March, it all came to a crashing halt...
Joe Joe: Morphea Because such a large area of my body is attacked my doctors believe that my internal organs are also affected...
Joe S: Morphea Scleroderma I am forty-two and have had Morphea for about fifteen years now. I have too many bruise-like marks on my body to count...
John: Surviving Son-in-Law of Scleroderma Patient My mother-in-law worked as a custodian and that may be a factor in causing her scleroderma...
John B: Eosinophilic Fasciitis or Scleroderma-Like Condition I have knee contractures that prevent me from walking, very tight skin in the legs...
John G: Raynaud's If I walk out to the mailbox across the front lawn for just a few seconds, my hands turn a greenish white color and become numb...
Johnny: CREST Scleroderma I have just won the fight to save my left foot. I spent the previous year and half fighting to save my big toe, but it had to go, because the pain was so unbearable...
Jon F: Gastroesophageal Reflux Disease (GERD) I believe my vagus nerve was damaged in some way during the Nissen fundoplication surgery or as a result of it...
Jonty: Son of Scleroderma Patient (Hyderabad, India) In 1997, I secured a seat in a medical college in Hyderabad and enrolled for the MBBS degree course. I then took my mother to meet Dr. Narasimhalu...
Jose C: Linear or Morphea Scleroderma? The spot I have is causing muscular atrophy and loss of strength...
Jose Luis: Morfea (Mexico) I am 17 and going though a difficult time. I need help and I hope someone will hear me and tell me something...
Joshua: Morphea My morphea doesn't look like most. In fact, it looks almost star-shape, mostly because it is in lines and not a solid shape. It is not hard either, so my fear is that it could be keloid morphea...
Joy: Mom of Cassi, Who Has Morphea I carefully checked the bruises; Cassi (age 6) said that they did not hurt and she did not have anyone hit her...
Joy W: CREST Scleroderma Two months after my fortieth birthday, I was diagnosed with CREST scleroderma with Raynaud's...
Joyce R: Scleroderma En Coup de Sabre When I was fifteen years old, somebody at school pointed out to me the fact that there was a white spot in the middle of my forehead, just below the hairline...
Joyce T: Scleroderma with Pulmonary Hypertension My pulmonary doctor ordered a medication for the pulmonary hypertension (PH) but my insurance denied it...
Juanita: Lupus I haven't talked to anyone so I feel kind of foolish posting this, but right now at 4 AM in the morning, I needed to get my thoughts out...
Judith F: CREST Scleroderma Having all this information about my condition is helpful but also a bit daunting...
Judy C: Mother of a Daughter with Linear Morphea Scleroderma Three months ago, our oldest daughter, Alison, was diagnosed with Linear Morphea Scleroderma (Juvenile Scleroderma)...
Judy Dee: Diffuse Scleroderma My skin began to harden and turn a shade of brown...
Judy R. Thompson Devlin: Diffuse Scleroderma with CREST He said 1 in 200 people get a disease in their lifetime, and that scleroderma was like having 20-30 diseases at once...
Judy King: CREST Syndrome A neurosurgeon performed a Digital Sympathectomy on my right hand and, thank God, my finger was saved...
Judy Tarro: Diffuse Scleroderma, Sjogren's, Pulmonary Fibrosis and Pulmonary Hypertension The best we can figure, I was diagnosed with diffuse scleroderma in 1956. I am now webmaster of SD World...
Jules: CREST She has left me with no answers or expectations and I'm afraid my obsession will only aggravate my symptoms...
Julian: Morphea About thirteen years ago I got a little white spot in my thigh (coin-like)...
Julie: Morphea Scleroderma I am now thirty-two years old and have had morphea for almost twenty years...
Julie B: Mother of Linear/Morphea Scleroderma Patient Her right leg is badly affected with a lot of scarring and muscle wasting and also the leg length...
Julie H: Sjogren's Syndrome, Polymyalgia Rheumatica, and Peripheral Neuropathy I am in pain all of the time, have trouble sleeping, and if I do not take a muscle relaxer every night, I will not be able to turn my head the next day...
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...
June: Widow of Pulmonary Fibrosis Patient I know that I am not the only person to have lost a loved-one to this terrible disease, but life is so empty without him...
(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

Kristi U: Systemic Scleroderma We sold our motel business because it hurt me so bad to work each and every day...
Chris D: Systemic Scleroderma About eighteen months ago my entire body began going haywire...
Iko H: Limited Systemic Sclerosis (Belgium) I am fifty-one years old and in May 2011 my diagnosis of scleroderma was confirmed. I am studying for horse veterinarian and am in my last year...
More New Stories
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