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Sjögren's Personal Stories

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer

Alex U: Swollen Salivary Gland (Italy) I have spent many months with the swelling on the left side of my face, even my ears, and I think I am developing osteoarthritis…

(Italiano) Alex U: Ghindola Salivare Allungata (Italia) Inoltre ho passato molti messi con la parte sinistra gonfia: l' orecchie, niente il menisco infiammato con una piccola artrosi…

Annette G: MCTD, Systemic Scleroderma, Sjogren's, Chronic Kidney Disease, CFS, Fibromyalgia, Trigeminal Neuralgia, TMJ People think that because I am a nurse I have all the answers. Well guess what? I don't…

(Italiano) Antea: Sindrome di Sjogren e il Lupus Eritematoso Sistemico Sono Angela dalla provincia di pesaro, ho 29 anni e da ieri ho scoperto di avere la Sindrome di Sjogren…

Beryl: Primary Sjogren's Syndrome I was diagnosed a year ago through an eye biopsy as I was having trouble with blurred vision. However, my main problem is with the dry mouth…

(Italiano) Betty C: Sindrome di Sjogren Tutto e' nato da un importante effluvium capillorum (caduta dei capelli) e astenia…

Brenda M: Primary Biliary Cirrhosis (PBC), Fibromyalgia, Pulmonary Fibrosis, and Sjogren's Syndrome In 1965, when I was twenty-six, I went to work for a firm of electro-platers, which was mainly aircraft work…

Cath: Sjogren's Syndrome Finally, a diagnosis for all of these (at times) debilitating symptoms…

Craig R: CREST Scleroderma I had my first scleroderma symptoms at age twenty-two, which included severe Raynaud's with some ulceration and tissue loss…

Daisy: Sjogren's, Spondyloarthritis and Fibromyalgia Everything started two years ago, with a pain in my knee for which I got surgery…

(Italiano) Daisy: Sjogren's, Spondiloartrite and Fibromyalgia Poi il dolore alle anche, alla schiena e adesso ho dolori diffusi da pertutto…

Danie: CREST Scleroderma My parents always thought of it as an excuse to miss school. It all started with my hands…

Dian H: Diffuse Scleroderma Having to take disability from work is the hardest thing I have ever done. Working at least kept my mind on other things besides the pain…

Dorne: Overlap and Possibly CREST Since 2002 I have been diagnosed with Lupus, Sjogren's Disease, B12 deficiency, mild pulmonary hypertension, Celiac disease, Type II diabetes and now the specialists are seriously talking about CREST…

Don Alfera: CREST, Pulmonary Fibrosis and Sjögren's I entitled this "My Time So Far" since this has been a journey unlike any that I could have ever tried to imagine in my life…

Dotty: Scleroderma, Sjögren's, Parotid Lymphoma I have taken control of my life and I just know there is a wonderful future for me…

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…

Franco: Sjögren's Syndrome (Italy) My name is Franco, I am fifty-seven years old, and three years ago I was diagnosed with Sjögren's Syndrome…

(Italiano) Franco: Sindrome di Sjögren Sono Franco ho 57 anni da tre anni mi hanno diagnosticato la Sindrome di Sjögren, ma in reata' sono quasi trenta anni che ne soffro.

(Italiano) Girasole: Sindrome di Sjogren Questa brevemente e' la mia storia se qualcuno/a vive la mia stessa situazione ed ha voglia di parlarne puo' scrivermi all'indirizzo e-mail pubblicato…

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…

Janet: Mixed Connective Tissue Disease I have just been diagnosed with Mixed Connective Tissue Disease (MCTD), lung fibrosis, Raynaud's and sicca (dryness) symptoms…

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…

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…

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…

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…

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…

Laura V: Sjogren's Syndrome (Italy) When I was thirty I was diagnosed with an undifferentiated connective tissue disease (UCTD), which was later specified as Sjogren's Syndrome…

(Italiano) Laura V: Sindrom di Sjogren (Italia) Ho 39 anni e all'età di trenta mi è stata diagnosticata una connettivita indifferenziata, in seguito meglio specificata come Sindrome di Sjogren associata a Les…

Laura W: Scleroderma, Sjögren's, Raynaud's and IBS I am glad to finally have an answer after years of tests, with no results…

Lu: Sjogren's Syndrome (Italy) I have migrant polyarthritis and enormous digestive problems…

(Italiano) Lu: Sindrome di Sjogren Soffro di poliatrite migrante e ho enormi problemi digestivi, eppure mi sento viva e positiva…

Lynn: Lupus, Scleroderma, Sjögren's and Polymyositis Overlap I am going to start to see the doctor more often and take better care of myself…

Marina F: Sjogren's Syndrome and Vitiligo (Italy) For quite a few years now I have had problems such as eczema in my ear, vitiligo, nodules in the thyroid, dry eyes with a positive Schirmer's test, and vertigo…

(Italiano) Marina F: Sindrome di Sjogren, Vitiligo Ho 47 anni e da diversi anni soffro di vari problemi quali: eczema alle orecchie, vitiligine, noduli tiroidei, secchezza oculare con test di schirmer positivo, e vertigini…

(Italiano) Marinella: Sindrome di Sjogren Soffro molto per questa mia situazione ma magari ci si pun fare forza a vicenda…

(Italiano) Maya: Sindrome di Sjögren Ciao a tutti, sono una ragazza di 27 anni erano sette anni che lamentavo disturbi di vario genere…

Michelle P: Sjögren's Syndrome I went to see Professor Hughes in London in 2010…

Michelle T: Surviving Daughter of Systemic Sclerosis Patient In memory of my mother, who was my best friend, my strength, my drive, and my compassion, I am compelled every day of my life to educate others of this disease…

(Italiano) Mimmo: Sindrome di Sjogren's Ma nessun medico sa spiegare cosa le succede tanto che qualcuno fa chiaro riferimento ad una malattia immaginaria…

(Italiano) Mony: Sindrome di Sjogren Questa malattia l'ho scoperta circa 10 anni fr, con sitomi di tipo secchezza alla pelle, senza saliva, molti problemi ai denti…

Moomary: Diffuse Scleroderma The endoscopy showed that my esophagus does not close at all when I swallow. The surgeon suggested that he could do a Nissen Fundoplication…

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…

Peky: Sjogren's and Hashimoto's Thyroiditis (Italy) This year, after continuing to be sick, I visited the rheumatologist again…

(Italiano) Peky: Sjogren e Hashimoto Solo quest'anno, dopo esser stata male, ho rivisto il reumatologo…

(Italiano) Perry: Sindrome di Sjögren Sono una ragazza di 26 anni e l'anno scorso mi è stata diagnosticata la sindrome di Sjögren associata a tiroidite autoimmune…

(Italiano) Simo: Sindrome di Sjögren Ciao sono Simonetta da Bologna e ho 23 anni. L'anno anscorso mi stata diagnosticata la Sindrome di Sjögren…

Natasha Lubin: Scleroderma Meets Sjögren's I started this page so I can keep finding connections between all of our diseases and how they interact upon on another…

Pieranna: Daughter of Mother with Sjögren's Syndrome (Italy) My mother was just recently diagnosed with Sjögren's Syndrome, after years of joint pain and dry mouth…

(Italiano) Pieranna: Sindrome di Sjogren (Italia) Ieri la mia madre é stata diagnosticata con il Sindrome di Sjögren, dopo anni di dolori alle articolazioni e secchezza orale…

Rebecca: CREST, Fibromyalgia, Sjogren's and Pulmonary Hypertension My finger has gangrene and the hand specialist says it needs to look like a mushroom before they will amputate…

Renae B: CREST, Sjögren's, Raynaud's I was diagnosed with scleroderma about four years ago at the University of Iowa Hospitals in Iowa City, Iowa…

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…

Rosú: Sjogren's Syndrome and Hashimoto's Thyroiditis (Italy) Sjogren's causes periferic polyneuropathy, with pain and loss of sensibility in my right hand and arm…

(Italiano) Rosú: Sindrome di Sjogren e Tiroidite da Hashimoto (Italia) La Sjogren mi causa polineuropatia periferica con dolore é perdita di sensibilitá alla mano e braccio destro…

Santo: Sjogren's Syndrome (Italy) I visited gastroenterologist, mouth experts, dentists, ears, nose and throat specialists, and none of them could explain the symptoms…

(Italiano) Santo: Sindrome di Siogren La parte esofagea si è risolta, ma restavano i sintomi alla bocca e poi sono venuti quelli agli occhi (secchezza del dotto oculare)…

SariHope: CREST Scleroderma and Sjogren's Syndrome During the first few years after being diagnosed with Raynaud's, I had to go to the grocery store with gloves on to reach into the frozen freezer…

Shar: Lupus, Scleroderma, Sjögren's, and Fibromyalgia Was my battle with Hepatitis C worth it? Yes!

Sharon: CREST with Limited Scleroderma, Sjögren's and Pulmonary Hypertension (Australia) Day by day I discover another food I cannot eat

Silezia: Mixed Connective Tissue Disease (South Africa) I believe that if we try to feel positive about our life and the cards we are dealt, then we can manage our disease most effectively…

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…

Susie: CREST Syndrome I have had CREST syndrome for the past eight years. My specialist is Dr. Frederick Wigley, from Johns Hopkins…

Syl: Systemic Scleroderma/CREST/Pulmonary Hypertension/Sjögren's The physician's assistant noticed that my hands went really blue…

Veronica: Sjögren's Syndrome (Italy) I am a 30-year-old woman and I have been suffering for three years from Sjögren's Syndrome with highly positive anti-SSA antibodies…

(Italiano) Veronica: La Sindrome di Sjögren Sono una ragazza di 30 anni da tre anni sono affetta da la Sindrome di Sjögren con alta positività per anticorpi anti-SSA…

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