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Lung (Pulmonary) Stories

Personal Stories with Pulmonary Involvement

Angiola: Progressive Systemic Scleroderma (Italy) I would very much like to find other people that find themselves in a similar situation…

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…

Archie Bailey: Scleroderma: Sue's Story Time has passed since Sue's death. Only those who have experienced the grieving process can understand…

Bill Jordan: Surviving Boyfriend of Scleroderma Patient Wendy was heartset on dancing that evening even though she was connected to an oxygen machine…

Bob: Pulmonary Fibrosis I have learned that you can fight Pulmonary Fibrosis and you do not have to give up all the activities you once enjoyed…

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…

Brianne: Surviving Daughter of Scleroderma Patient I think I was eleven when my dad had to go to Edmonton, Canada, for tests…

Brother Alan: Systemic Scleroderma I was diagnosed with Scleroderma three years ago and "too many times ten" doctors later, here I am…

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…

Gerald: Spouse of Scleroderma Patient She would often comment how she wished they could figure out what was wrong, give her the pill to fix it, and she would feel fine again…

Grace: My Mother's Fight Against Pulmonary Fibrosis I lost my mum eight months ago, after a two-year fight against pulmonary fibrosis…

Jackie: Scleroderma, CREST, and Pulmonary Hypertension We were identical twins, and she died in 1988 from kidney failure…

Joanne: Diffuse Scleroderma (Now in memory of Joanne by Lis) My hands became very swollen and I was unable to make a fist…

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 on supplemental oxygen and I am webmaster of SD World website and email list…

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

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…

Krista: My Caregiver's Story All those years beside him, seeing him suffering, being frustrated about the fact that I could not do anything to help him…

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…

Lori: Surviving Daughter of Father who had Scleroderma We held his hands and told him how much we loved him and watched him take his last breath at 5:50 p.m. on September 6, 2002…

Mani: Son of Systemic Scleroderma Patient (Hyderabad, India) My mother was always complaining of breathlessness, slight fever, and nails and fingers turning blue when exposed to cold air…

Marilyn: Diffuse Scleroderma Being that I was a nurse you would think that I should have picked up on this myself…

Michele C: Surviving Daughter of CREST Patient My dad was diagnosed only four months prior to his death with CREST Syndrome…

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…

Naomi: Systemic Sclerosis and Pulmonary Fibrosis My doctor is astonished of my attitude considering I have Raynaud's, my fingers are curling up and I have lost my nails, pulmonary fibrosis…

Pam: Systemic Scleroderma for 27 Years (Australia) I have had several amputations…

Ron: Fibrosing Alveolitis I was diagnosed in October 1996. Since then I have spent a lot of time in the hospital, including six weeks in intensive care…

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…

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…

Tami: Morphea Scleroderma I have gotten used to the stares everyone casts my way because in their eyes I am different. Unique, I guess…

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…

Terry: CREST I was told that I have CREST by a doctor who saw me in a Workman's Compensation case…

Theon: Scleroderma and Pneumothorax This is very hard for me, because I was a very active woman, and then suddenly I am totally and completely disabled…

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…

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…

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