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Overlap Patient & Caregiver Stories

Andi P: UCTD and Possible Scleroderma It is believed that I do have an autoimmune disease they are not sure if it is systemic or not, but I know what I live through on a daily basis…

Angela S: Overlap Syndrome I am twenty-five years old and I was diagnosed with polymyositis and scleroderma, rheumatoid arthritis, mitral valve prolapse, a heart murmur, and pericarditis…

Annette G: MCTD, Systemic Scleroderma, 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…

Buggzy: Autoimmune Hepatitis, Fibromyalgia, Undiagnosed I am really desperate to get some answers or to hear from others in the same boat as me…

Cindy: Undifferentiated Connective Tissue Disease (UCTD) He seems to think that I have Systemic Lupus Erythematosus, but until my symptoms show more criteria for it, he can't call it that…

Daniel B. Koch: Mixed Connective Tissue Disease with Scleroderma Two months after I was born the doctors noticed that my growth rate was very slow…

Daphne: Daughter of Scleroderma/Polymyositis/Antisynthetase Syndrome Overlap Patient By early 2005, she began to exhibit Raynaud's phenomenon. She was also having swelling in her face, hands and feet…

Dawn M: Linear/Systemic Scleroderma My family and I were informed by the doctors, that the localized/linear form of scleroderma that I was diagnosed with, would never progress into the potentially fatal, systemic form…

Debbie G: CREST, Lupus, Interstitial Lung Disease and Pulmonary Hypertension It has been a very long and bumpy road at times but somehow through all the hospital visits and other illnesses I have managed to stay ahead of the game by a step or two…

Deborah M: CREST Scleroderma, Systemic Lupus, Rheumatoid Arthritis, Ankylosing Spondylitis, and Fibromyalgia When we are given the CREST diagnosis, does that mean that we definitely will have the tight skin eventually?

Debs B: Diffuse Systemic Sclerosis (England) This seems to be a long list of ailments that I have been coping with for years, so the addition of diffuse systemic sclerosis did not really panic me…

Diane M: MCTD, and Surviving Sister of Scleroderma Patient I do not know what lies ahead for me on this path, I only hope that I can be as strong as my sister was…

Donna C: Undifferentiated Connective Tissue Disease (UCTD) I am beginning to get tired of going for test after test and not find a specific reason for my symptoms…

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…

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…

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…

Fran: UCTD After years of suffering from a long list of unexplained complaints (fatigue, muscle/joint pain, rashes, fever), I was diagnosed with UCTD…

Gail: Undifferentiated Connective Tissue Disease (UCTD) They did a series of tests and blood work and found I had Interstitial Cystitis, a positive ANA, and gastrointestinal dysmotility…

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…

Heidi: Difficult Diagnosis of UCTD Do these symptoms resemble the beginning symptoms for others who have gone on to be diagnosed with scleroderma?

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…

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…

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…

Joyce T: Scleroderma with Pulmonary Hypertension My pulmonary doctor ordered a medication for the pulmonary hypertension (PH) but my insurance denied it…

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…

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

Kate: Possible Scleroderma/Lupus Overlap At some point in that dreary winter month, I began waking up with swollen hands…

Kaycee: Diffuse Scleroderma with Polymyositis The rheumatologist confirmed the diagnosis of diffuse scleroderma on my initial visit to him. Since then, I have had a muscle biopsy, which confirmed polymyositis…

Kellie: Overlap Scleroderma and Mixed Connective Tissue Disease (MCTD) I am so relieved to read about so many people who have had the same experiences…

Krista: Scleroderma in Overlap Many of you probably know that I have translated "SCLERO.ORG" into my language, Romanian…

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…

Jennifer: Surviving Daughter of Overlap Syndrome Patient This letter was written by my dad and was read at my mother's memorial service in October of this year…

Laira: MCTD, Scleroderma, SLE, Lupus, CREST, Lymphoma I was just seventeen when I was told I had rheumatoid arthritis…

Laura Jean: Pulmonary Hypertension/UCTD Two weeks later I was diagnosed with severe pulmonary hypertension and a pulmonary embolism in my right mid lung…

Laura M: UCTD A rheumatologist told me I did not look sick and to "get a life"…

LaVonne: Surviving Mother of a Daughter with MCTD Hello, I am the mother of an only daughter who had Mixed Connective Tissue Disease (MCTD). She died in March 2000, at thirty-five years of age…

Lee: Undifferentiated Connective Tissue Disease (UCTD) A Sloan-Kettering researcher said our problems were related to HLA-B27 inheritance…

Linda F: CREST Scleroderma, Rheumatoid Arthritis, Fibromyalgia, Hashimoto's Thyroiditis, Hematoma, and Osteomyelitis I need to tell you all the gory details so you can truly understand what a miracle it is that I am alive today…

Lisa P: Undifferentiated Connective Tissue Disease (UCTD) I have an appointment with a new rheumatologist on May tenth. Hopefully I will get some answers…

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…

(Polski/Polish) Maria P: MCTD z Sklerodermia W tej sytuacji tylko pozostaje mi wolanie o pomoc, bo zycie bardzo szybko uchodzi,poprostu ta choroba zabija…

Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success…

Matilda: Systemic Scleroderma (South Africa) I don't think there is a lot of support in South Africa and I would actually like to start a group where people with the same disease can meet and discuss how they cope with the illness…

Mick Breske: UCTD/Lupus I felt I was being treated as some dumb blond. Finally one day I was referred to a Rheumatologist…

Missie R: Mixed Connective Tissue Disease I finally asked for an ANA test to check for lupus. My family doctor hesitated because my symptoms were all over the board…

Monica: MCTD This diagnosis is a bittersweet one for us. Yes, after seven years of hell, we now have a name…

Myrianisa: Daughter of a Severe Scleroderma Patient My mother was diagnosed with scleroderma six years ago. At the same time, she was also diagnosed with lupus, Raynaud's, MCTD, pulmonary fibrosis and fibromyalgia…

Nan: Mixed Connective Tissue Disease and Fibromyalgia Finally after several years of struggle, one wonderful doctor at OSU got gutsy and gave me the MCTD diagnosis…

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…

Peggy H: Undiagnosed MCTD? I have been told for twenty years that I might have Mixed Connective Tissue Disease (MCTD), but I haven't been definitely diagnosed…

Serena: MCTD/Diffuse with CREST During her 20 years from onset to diagnosis, her Calcinosis was diagnosed as fungus…

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…

Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue…

Swede: UCTD or Hypochondria I have been experiencing severe pain in my feet and ankles for the last two years…

Syl: SD/Crest/PH/Sjögren's The physician's assistant noticed that my hands went really blue…

William M: Scleroderma or Lupus I had to give up my career of being a registered nurse (RN) over two years ago due to total disability…

Yvette: Undifferentiated Connective Tissue Disease (UCTD) and Thyroid Cancer For now, I have accepted that the diagnosis of my core problem is not important. The way I choose to deal with it is…

Romanian Patient Stories

Krista: Povestea Mea - Scleroderma in Overlap Nu este prea usor, sa incepi sa-ti scri propria istorie, in asemenea situatie…

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