| Systemic Sclerosis: Diffuse Scleroderma |
| This page was written by Shelley Ensz, and medically edited by Dolores Vázquez-Abad, M.D.. See Disclaimer. |
|
|
| Diffuse Scleroderma Patient & Caregiver Stories |
| Amanda: Diffuse Scleroderma Systemic Sclerosis I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007... |
| Ana Lucia: Diffuse Scleroderma I am twenty years old and I was diagnosed with diffuse systemic scleroderma a year and a half ago... |
| (Español/Spanish) Ana Lucia: Esclerosis Sistemica Difusa Estoy en tratamiento de corticoides. Y ciclofosfamida llevo un año y medio en hospitales he tenido que ingresar... |
| Anastasia: Surviving Granddaughter of a Diffuse Scleroderma Patient We went everywhere to figure out what she had but no one knew. Traveling to a different hospital finally we heard scleroderma... |
| Angela M: Diffuse Scleroderma The rheumatologist that treats me says it is due to the illness, but my orthopedist says it is a problem that should be operated... |
| Annette: Diffuse Scleroderma I can see where having friends who understand what I am going through would be a big help... |
| Archie Bailey: Scleroderma: Sue's Story Time has passed since Sue's death. Only those who have experienced the grieving process can understand the profound agony death presents to friends and loved ones... |
| Barb: Diffuse Systemic Scleroderma I was diagnosed in 1985 with systemic scleroderma and Raynaud's. It has affected my esophagus, fingers, toes and bowels, and recently I started having mini strokes... |
| Bill: Diffuse Scleroderma I was relieved to have a label for my condition but the doctor was not very reassuring telling me that there was no effective cure or treatment... |
| Bill Jordan: Surviving Boyfriend of Scleroderma Patient Wendy was heartset on dancing that evening even though she was connected to an oxygen machine... |
| Carmen Rijos: Systemic Scleroderma Carmen is in need of a stem cell transplant for scleroderma. This is a request for donations for the Carmen Rijos Private Foundation... |
| Carlos S: Son of Father with Diffuse Systemic Sclerosis (Diffuse Scleroderma) My father is a simple man, he works the land, and does not have a great degree of schooling, but if there is something he has been taught is to never give up... |
| (Español/Spanish) Carlos S: Hijo- Sistémica Difusa Mi papá es un hombre simple, del campo, no tiene muchos estudios, pero si hay algo que a él no le enseñaron fue a desistir... |
| Carol Langenfeld: Diffuse Scleroderma (Carol is co-author of the book Living Better : Every Patient's Guide to Living with Illness) People tell me that I have earned my credentials as a "certified patient" the hard way after more than twenty-three years... |
| Christine S: Diffuse Stage 2 Scleroderma I did not know whether to break out the tissues or the champagne or both! I was so happy that finally someone had agreed that had something wrong with me, and that it had a name... |
| Cindy Fuchs-Morrissey: Mother of a Progressive Systemic Sclerosis Child Hilary has an aggressive form of scleroderma with swallowing problems, bowel problems, fatigue, acral bone dysplasia of the hands and feet... |
| Connie: Surviving Daughter of Scleroderma Patient My mother lived with scleroderma for thirty-nine years and just passed away on January 10, 1999. at the age of fifty-two... |
| Crissie: Surviving Sister of Scleroderma Patient Seek out a doctor who specializes in this disease as soon as you know you have it... |
| Cynthia: Diffuse Scleroderma I was so stressed out over having this disease that I could not eat. I lost weight and I lost my strength... |
| Darlene: Diffuse Scleroderma (New Jersey) Now that I have become more knowledgeable about scleroderma, I feel I can cope with it better... |
| Dave Wilcher: Diffuse Scleroderma Early in 1998, I noticed my hands were swollen. I had a hard time gripping the handle of my coffee cup... |
| Deborah Peck: Diffuse Systemic Sclerosis I first noticed my hands turning white in 1992 after my father's funeral... |
| Del: Deaf with Systemic Scleroderma Is anyone out there like me? It's my hope and wish to make contact with someone else who is also Deaf with SD... |
| Denise E: Diffuse Scleroderma I was first diagnosed with diffuse scleroderma in February 2002, but my symptoms began subtly in the summer of 2000... |
| Elizabeth G: Diffuse Scleroderma I was fired from my job since I cannot work as I used to... |
| Elva: Mother of Diffuse Scleroderma Patient My son is unable to put on his own socks and shoes. He is very tired, and has tremendous pain... |
| (Italiano) Gabriela: Scleroderma Diffuse Mi chiamo Gabriela, ho 17 anni e abito a Londra. Sono stata dignosticata con Scleroderma e Raynaud's Phenomenon quando avevo 15 anni... |
| Gazea: Diffuse Scleroderma I would like to at least try to suggest a small ray of hope for other sufferers of diffuse scleroderma... |
| Greg: Diffuse Scleroderma and Lung Transplant Patient I asked Dr. Frank C Arnett to see if I was a candidate for a lung transplant... |
| Helen P: CREST Scleroderma I was diagnosed ten years ago when the symptoms kicked in with a vengeance following a very traumatic personal tragedy... |
| Jacquie: Diffuse Scleroderma I am fifty-six years old and I was diagnosed with systemic scleroderma in November of 2003, right when menopause hit... |
| Jamie: Surviving Spouse of Progressive Systemic Sclerosis Patient My husband Jerry, age 35, was diagnosed with scleroderma in January 2000... |
| (Español/Spanish) Jeins: Esclerodermia Sistemica Difusa y Dermatopolimiositis Mi piel quedo muy sensible y quede con cicatriz en las manos y muchos dolores en las articulaciones, pero no importa... |
| Jennifer Weldon: Systemic Scleroderma/Stem Cell Transplant Patient I was put on a ventilator and complete life support. I had five open heart surgeries, and suffered severe nerve damage in my right leg... |
| Jewell: Diffuse Progressive Systemic Sclerosis When I think back, I had been getting sick for a long time. I just did not know it... |
| Joanne: Diffuse Scleroderma My hands becoming very swollen and I was unable to make a fist. My doctor prescribed water pills as he thought I was just retaining water... |
| 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. Has anyone else out there been a custodian and now suffers this affliction? |
| John B: Eosinophilic Fasciitis or Scleroderma-Like Condition I have knee contractures that prevent me from walking, very tight skin in the legs... |
| Judy Dee: Diffuse Scleroderma My skin began to harden and turn a shade of brown... |
| 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... |
| Judy Rose Thompson: Diffuse Scleroderma with CREST He told me that 1 in 200 people get a disease in their lifetime, and that Scleroderma was like having 20-30 diseases at once... |
| Kappy: Sister of Diffuse Scleroderma Patient So now, I offer my sister's story with the belief that it too will inspire the same hope I once found... |
| Karen C: Daughter of Diffuse Scleroderma Patient (Chile) My father is Juan, he's fifty-two and suffers from diffuse scleroderma... |
| Karen M.R.: Diffuse Scleroderma and Fibromyalgia I was so glad she was there, because I sort of went into shock when the doctor said she was going to start me on chemo treatments... |
| Karen T: Daughter of Progressive Systemic Scleroderma Tubal feeding does not look scary, and it is not the beginning of the end; instead, it is a new beginning for her... |
| Kasey: Daughter of a Diffuse Scleroderma Patient The hardest part for my mother is accepting that she does have scleroderma and needs to face the facts about it... |
| 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... |
| 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... |
| Krissy: Systemic Scleroderma/Stem Cell Transplant Patient Our home is like a hospital. We have oxygen tanks for when I need extra help breathing, and a lovely kangaroo pump which is how I get my continuous feeding in me... |
| Kym: Diffuse, CREST Scleroderma, Lupus and Fibromyalgia It all started with Raynaud's in my fingers and toes when I was about nineteen years old, in 1979... |
| Lisa V: Diffuse Scleroderma and Raynaud's When I first got sick, I thought I was dying. My fingers started hurting really bad... |
| Lynn S: Diffuse Scleroderma and Pulmonary Hypertension No one believed me; I guess because I look healthy. I would always hear, 'You are too young for this!' It is hard for people to understand... |
| Marilyn: Diffuse Scleroderma Being that I was a nurse you would think that I should have picked up on this myself... |
| (Italiano:) Maria Cristina: Sclerodermia Sistemica Progressiva Mi stata diagnosticata all'et di 14 anni una Sclerodermia Sistemica Progressiva ad uno stadio molto avanzato con una aspettativa di vita minima (si parl di 6 mesi)... |
| Mary S: Diffuse Scleroderma When he called the internist I was in the office and I heard him say, "I think I am sending you a patient who has scleroderma but I am not sure. She has a lot of the symptoms." |
| Mary Theresa: Daughter of Diffuse Scleroderma with CREST Patient Over the years we had all been in denial, ignoring the fact that we knew that she had a serious disease that can be fatal... |
| Michelle R: Surviving Daughter of Diffuse Scleroderma Patient I always look at those first early years of my life as my mother's last... |
| Mike Thomas: Diffuse Scleroderma The doctors keep passing me around saying that I am too complicated for them to treat. So nothing gets done... |
| Missy K: Diffuse Scleroderma (South Africa) I am on chemotherapy and often feel sick. I would like to correspond with other sufferers... |
| 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... |
| Nickole: Surviving Daughter of Diffuse Scleroderma Mother I am not sure how long my mother had scleroderma, but I do know that the doctors did not know much about it at the time... |
| Pam M: Diffuse Scleroderma, CREST and Raynaud's I went to a rheumatologist and after she had almost killed me with all the tests and drugs for a year, she threw her hands up and said there was nothing else she could do... |
| Rhonda L: Systemic Scleroderma I have recently been diagnosed with sclerodema, and am still trying to wrap my brain around this... |
| Rodger Mansfield: Widower of a Diffuse Scleroderma Patient Fortunately, Kathleen was able to get a quick and accurate diagnosis of diffuse scleroderma... |
| Rose: Diffuse Scleroderma The decision to amputate was made, and the pain that kept me up in tears all night, every night was finally gone... |
| Rosebud: Diffuse Scleroderma My hands are the worst. They are completely swollen, red, itchy, with burning sensation and in pain constantly... |
| Rosemary F: Surviving Daughter of Diffuse Scleroderma Patient She tried to explain it, but it was hard for me to comprehend the disease's symptoms. Mom said that it was the same thing that her oldest sister died from... |
| Sandy: Diffuse Scleroderma After years of complaining about various symptoms to doctors, I was diagnosed with Diffuse Scleroderma in 1993... |
| Serena: MCTD/Diffuse with CREST During her 20 years from onset to diagnosis, her Calcinosis was diagnosed as fungus... |
| Sherrill: Diffuse Systemic Scleroderma (New Zealand) I could no longer walk, due to knee contractures. My hands resembled claws. I had elbow contractures and neck contractures, and could not straighten my arms... |
| Sparky: Diffuse Scleroderma My pulmonary disease worsened only slightly over the past year. I now face the decision to take cytoxan... |
| Steve D: Diffuse Scleroderma (England) My symptoms started in 1993, when I noticed my fingers would start to get cold even though it was summer and the temperatures were mild... |
| Sue D: Diffuse Scleroderma Pain developed in my hands, then I noticed pain in my knees, then my shoulders, down my back, elbows, hips, feet... |
| Sujatha: Diffuse Systemic Sclerosis (Bangalore, India) I am 36 years old and hail from Bangalore in the Southern State of Karnataka in India... |
| Susan L: Diffuse Scleroderma I first noticed the swelling in my hands and feet shortly after my daughter was born in 2005, and thought that it was post-pregnancy fluid... |
| Syl: SD/Crest/PH/Sjögren's The physician's assistant noticed that my hands went really blue... |
| Tata P: Diffuse Scleroderma I am thirty-two years old, and I have been suffering this illness since I was nine... |
| (Español/Spanish) Tata P: Esclerodermia Difusa Hola, tengo 32 años, y padezco esta enfermedad desde los 9... |
| Tina Lech: Diffuse Scleroderma, Fibromyalgia, Pineal Cyst I was a very active, alive, mother of three who were all in school. I was out playing baseball... |
| Tommi: Diffuse Scleroderma I would like to talk with others who have heart involvement... |
| Trish: Spouse of a Diffuse Scleroderma Patient My husband was diagnosed with scleroderma in June of 2000. We had never heard of the disease before, but boy do we know alot now thanks to this site... |
| Sonya: Daughter-in-Law of Diffuse Scleroderma Patient I think that we all need to give her permission to die. I believe CB is hanging on for everyone else... |
| (Italiano) Viola: Sclerodermia Sistemica Diffusa Sono una ragazza di 22 anni; all'et di 12 anni all'improvviso mi sono comparse delle macchie violacee sul ginocchio sinistro... |
| Yolima: Diffuse Scleroderma I was misdiagnosed for more than a year with so many diseases and given all types of medication for different problems except for the real disease... |
