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Pulmonary Fibrosis Patient Stories

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

A.M. Keyes: Surviving Daughter My father died on February 9, 2002 from pulmonary fibrosis, a complication of scleroderma…

Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite…

(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito…

Alexandra: Scleroderma My scleroderma symptoms arrived in great style: reflux, itchy swollen skin, joint and muscle pain and tiredness. Plus hundreds of little red spots (telangiectasia). My mouth was tight and getting smaller too…

Andy Markman: Systemic Sclerosis I am a forty-two-year-old male. I have had scleroderma for two and a half years. It was first diagnosed as an "atypical phenomena"…

Andy P: Surviving Son of Fibrosing Alveolitis Sufferer The hospital is blaming the fibrosing alveolitis, which they say entered an aggressive phase two days before his death…

B.C.: Surviving Daughter of Pulmonary Fibrosis Patient Immediately after the diagnosis my father started to go downhill…

(Español/Spanish) B.C.: Hija de Paciente con Fibrosis Pulmonal Inmediatamente despues del diagnostico mi padre empezo a deteriorarse tan rapido…

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

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

Catherine C: Surviving Daughter of Pulmonary Fibrosis Patient Less than twelve months later, on September 8, 2005, my mum died in the hospital, after suffering a collapsed lung three weeks earlier…

Catherine S: Surviving Daughter of Pulmonary Fibrosis Patient It's been nearly nine months ago now. I miss my mother every day…

Corey C: Surviving Daughter of Scleroderma Patient It was a very long process and scary because she really did not know what to expect next…

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…

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…

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…

Debs C: Surviving Daughter of Fibrosing Alveolitis Patient I miss her terribly, but am thankful that she did not have to live in a helpless state, which was her greatest dread…

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…

Dianne R: Crest, Pulmonary Fibrosis Twelve years ago they told me I would never see fifty and I have beaten them by three years…

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…

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…

Greg: Diffuse Scleroderma and Lung Transplant Patient I asked Dr. Frank C Arnett to see if I was a candidate for a lung transplant…

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

Jerri: CREST Syndrome I was twenty-one years of age when I first noticed that my fingers, toes and lips were turning colors…

Joan B: Scleroderma and Raynaud's One day in 2000, I was raking leaves and my hands were really cold. I went into the house in pain and my hands looked like I had frostbite…

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…

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…

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…

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

Karen C: Daughter of Diffuse Scleroderma Patient (Chile) My father is Juan, he's fifty-two and suffers from diffuse scleroderma…

Karligash: Systemic Scleroderma (Republic of Kazakhstan) Young, beautiful, full of hope and expectations for my life, for happiness and love — that was me, 19 years of age…

(Russian) Карлыгаш: системная склеродермия (Республика Казахстан) Молодая,красивая,полная ожидания от жизни счастья,любви такая я была в 19 лет…

Keenan: Surviving Son of Fibrosing Alveolitis Patient Dad passed away now almost 4 years ago. It still hurts knowing that I will never be able to ask his advice or listen to his corny jokes again…

Lenor: Polymyositis, Pulmonary Fibrosis and Raynaud's Phenomenon In May of 1999, I was diagnosed with polymyositis and Raynaud's phenomenon then, in March of 2001, with pulmonary fibrosis…

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…

Manu: Daughter of Patient with Systemic Scleroderma (Italy) I recently lost my father, and in his last moments he suffered very much. He was affected by systemic scleroderma that began with simple inflammation of his hand in November of 2006…

(Italiano) Manu: Figlia di Padre Malato di Sclerodermia Sistemica (Italia) Ho perso mio papà una settimana fa, dopo atroci sofferenze. Era affetto da sclerodermia sistemica iniziata con un banale gonfiore di una mano nel novembre 2006…

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

Mendyon: Mother-in-Law of CREST Patient Unfortunately, as I sit here writing this letter my husband and I are faced with some grim circumstances. She is currently losing her battle to CREST syndrome…

Missy K: Diffuse Scleroderma (South Africa) I am on chemotherapy and often feel sick. I would like to correspond with other sufferers…

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…

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…

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…

Noreen: Surviving Mother of Fibrosing Alveolitis Patient (Manchester, England) Alana gave us the most precious 14 months of our life, and because of Alana we now look after profoundly handicapped children…

Pearl: Surviving Daughter of Pulmonary Fibrosis Patient We watched her struggle daily to breathe, yet there was nothing anyone could do, not even the doctor…

Queenie: Systemic Sclerosis with Pulmonary Fibrosis (Liverpool) It was only when my mother went onto the internet looking at illnesses that had all the symptoms that I was showing that we found Raynaud's and scleroderma…

Rodger Mansfield: Widower of a Diffuse Scleroderma Patient Fortunately, Kathleen was able to get a quick and accurate diagnosis of diffuse scleroderma…

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…

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

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…

S. Davenport: Surviving Daughter My father died from cryptogenic fibrosing alveolitis and for the last two years of his life he suffered very badly with this disease…

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

Tony B: Systemic Scleroderma with Pulmonary Fibrosis, Pulmonary Hypertension and Raynaud's It has taken me some time to come to terms with this disease…

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…

Support Groups

American Lung Association.

Pulmonary Fibrosis Foundation. The Pulmonary Fibrosis Foundation is the primary organization dedicated to finding a cure for and raising awareness of Pulmonary Fibrosis, an often fatal lung disease. The Foundation is also devoted to improving the quality of life for those afflicted with this illness. Pulmonary Fibrosis Foundation.

Go to Pulmonary Fibrosis Symptoms
 
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Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
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In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

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