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Limited Scleroderma Patient and Caregiver Stories

Amy B: Limited Scleroderma with CREST I am a full time pharmacist in a pediatric hospital. In February or March of this year, I began to be very intolerable of the cold…

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…

Angela K: Limited Cutaneous Scleroderma I was told I had limited cutaneous scleroderma with Raynaud's phenomenon six years ago…

Angela O: CREST Now, the calcinosis is so bad on my fingers, that I find ordinary chores harder and harder…

Brenda: Limited Scleroderma, CREST, Raynaud's I was sick for five or six years, telling doctors how much pain I was in…

Christene: Limited Scleroderma I was diagnosed when I was just nineteen and at that time it was one of the scariest moments of my life…

Circadiano: Limited Scleroderma with Raynaud's in One Finger (Italy) About ten years ago she was diagnosed with lupus…

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…

D.M. Hoffe: Progressive Systemic Sclerosis (Scleroderma CREST) After an endoscopy it was discovered I had a Watermelon Stomach…

Dee B: Limited Scleroderma/CREST Syndrome I also had the problem with people saying I was a hypochondriac, as at that stage all the doctors I saw found nothing wrong with me, but I constantly felt weary and ill…

Dodo: Limited Systemic Scleroderma (Italy) The tips of my fingers turned cold, and then became cyanotic, always hurt and in the end they became ulcerated…

(Italiano) Dodo: Sclerodermia Sistemica Limitata (Italia) Ho iniziato ad avere alcune punte delle dita delle mani molto fredde, che in pochi giorni diventarono prima cianotiche, sempre piú doloranti e infine presentarono delle ulcere…

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…

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…

(Italiano) Eli: Sclerodermia e Sindrome di Raynaud (Italia) Finalmente dopo 13 anni di sofferenza ho diritto anche io a una diagnosi e una cura,prima che sia troppo tardi. Spero…

Helen P: CREST Scleroderma I was diagnosed ten years ago when the symptoms kicked in with a vengeance following a very traumatic personal tragedy…

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…

Irja: CREST, Limited Scleroderma I'm a 34-year-old woman from the land of Santa Claus, Finland. Ive had CREST since 1998…

Jackie: Scleroderma, CREST, and Pulmonary Hypertension We were identical twins, and she died in 1988 from kidney failure. We both started with Raynaud's…

Jenny: Severe CREST Syndrome and Limited Scleroderma I completed my last marathon in January 2002. On the advice of my doctors, I will not continue to run such long distances…

Jo P: Limited Scleroderma and Raynaud's I could barely walk ten feet without needing to sit down…

Kamlesh: Husband of Limited Scleroderma Patient (India) In a pulmonary function test, there was severe restriction and severe obstruction…

Kath: Systemic Sclerosis (Scleroderma) Moving to Spain has had a positive effect on my Raynaud's, but has had no effect, so far as I am aware, on my scleroderma…

Kathy H: En Coup de Sabre Scleroderma When I was five years old I got a small black line in my forehead, a spot, like a mole, so my parents were not too worried about it…

(Español/Spanish) Kathy H: En Golpe de Sable A los cinco años me empezó a salir una línea negra en la frente, parecía mancha, como un lunar, así que mis padres no se preocuparon…

Kathy M: CREST (Limited Systemic Scleroderma) If you do not have the right doctor, do not get furious, move on…

Kelly: CREST (Limited Cutaneous Systemic Sclerosis) At first, the rheumatologist hinted that he felt my primary care physician was overreacting…

Kerrie: CREST Syndrome with Limited Scleroderma If I was not stressed before I went in, I certainly was then. I am going to get referred on to see someone different. Hopefully, I will be luckier second time around…

Leeben: Limited Scleroderma and CREST I won't go into how many doctors I had to visit before someone took me seriously; it was a total nightmare…

Lisa C: Limited Scleroderma My mother has rheumatoid arthritis (RA) and my thirteen-year-old daughter has what is believed to be early lupus…

Lorrie: Limited Scleroderma/CREST At first I thought, "Oh my goodness! I am going to die." But my doctor assured me that I could very likely live to be an old woman…

Maria: Scleroderma and Raynaud's (Ukraine) I live in a small town and in a poor country. My doctors have no computers or medical magazines…

Melinda: Granddaughter of Systemic Scleroderma Patient My grandmother was diagnosed with systemic scleroderma approximately twenty-five years ago…

Peggy: CREST and Raynaud's Years later, at fifty-six, my family doc said he thought I had scleroderma because I was having trouble with my hands, and my fingers looked like sausages…

Rosie: Limited Systemic Sclerosis (Australia) Some of my symptoms may not be due to limited scleroderma, however most of these symptoms have appeared since my diagnosis…

Rouge: Limited Systemic Sclerosis (Italy) I am 35 years old, and up to two years ago I thought I was only suffering from Raynaud's Phenomenon…

Sbirulino: Limited Systemic Sclerosis, First Stage Biliary Cirrhosis (Italy) They diagnosed Raynaud's Syndrome, until there was amputation of the first and second phalanges, which caused total invalidism…

(Italiano) Sbirulino: Sclerosi Sistemica variante Limitata, Cirrosi Biliare Primitiva (Italia) Mi avevano diagnosticato la sindrome di Reynaud, fino all'autoamputazione delle Ie e IIe falangi arrivando a portarmi ad una invalidità totale del 100%…

Sharon: CREST with Limited Scleroderma and Sjögren's (Australia) Day by day I discover another food I cannot eat, as I get heartburn (Esophageal Dysfunction) and my mouth and my tongue burn. I cannot eat any fruit or fruit juices…

Sheila: CREST with Limited Scleroderma I felt really scared, confused, and dehumanized in the process of my diagnosis and further dealings with the "western medical field"..

Sheila Z: Scleroderma I would like to first say that this site has been a great help for me to understand what is happening to my body and my life…

Shirley Wright: Limited Scleroderma I have had this disease for over twenty years now and I plan on being around a lot longer…

Soose: Limited Scleroderma I may have had scleroderma for the last year and a half or two years and did not know it…

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…

Tara: Systemic Scleroderma I was diagnosed with scleroderma in January 2000, but I have had it since April 1997. It only became worse in the new year…

Theresa C: CREST/Limited Scleroderma I am fifty years old and I was diagnosed with CREST in OctoSeptember1996…

Tui: Limited Systemic Scleroderma I am wondering whether such treatments will be ongoing?

Go to Systemic: Diffuse Scleroderma
 
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