SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Stories in English: O

Olga: Difficult Diagnosis Recently I came across sclero.org while researching my illness that has not been recognized neither in my native country nor in Italy, where I moved twelve years ago to escape from cold winters which have destroyed my skin…

Stories in English: P

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

Pamela W: Morphea Scleroderma It started as a bruise about the size of a dime under my arm…

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…

Paolina F: Essential Telangiectasia It initially started on my feet and has progressed to most of my legs, arms, and I have some spots on my torso…

Papa V: Lupus, Antiphospholipid Syndrome, Myasthenia Gravis, and Scleroderma About thirty years passed, and then—BAM !—I got a heart blockage, stroke, liver biopsy due to elevated enzymes, skin rash, high blood pressure, very high ANA…

Pat: CREST Scleroderma They had to do surgery and take calcium deposits out of my knee…

Patchlady: Morphea I am very scared that it could get worse, and have not been given any indications on how to treat it…

Patricia M: Morphea My breasts looked as if they were on fire…

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…

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…

Peggy: CREST and Raynaud's Years later, at fifty-six, my family doc said he thought I had scleroderma because I was having trouble with my hands, and my fingers looked like sausages…

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…

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

Penelope: CREST Scleroderma (Italy) I was tired, my joints ached, and my hands turned different colors…

Peter: Burn Survivor with Scleroderma My left hand had contracted so much that I had to wear a protective piece of plastic on my palm to prevent my fingernails growing through the skin…

Phyllis: Morphea At age 63, I noticed shiny places on my abdomen. I thought it was a fungus…

Phyllis C: Scleroderma How many new cases are coming up now from people that were at the World Trade Center? I was there along with co-workers that are very ill now…

Phyllis K. Phillips: Scleromyxedema I have been living with scleromyxedema for ten years, and as you may know, there is very little information about it…

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…

Pree: Morphea Even if I get the right treatment or not, I will not let this disease ruin my life…

Pushpa: Scleroderma with Raynaud's (Bangalore, India) Around my twenty-first winter, the year of 1982 in Calcutta, India, is when I first noticed my nails and fingers were turning blue when exposed to the cold…

Stories in English: Q

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…

Stories in English: R

Rachel: Morphea Scleroderma I have learned to control the use of addicting medication and to manage the pain as well as possible…

Rachelle: Interstitial Cystitis I am just happy after two and a half years to know that I have a real answer and I can get better…

Rafvis: Systemic Scleroderma There were practically times when I had no sense of touch…

Rao: Caregiver of Morphea Patient My son-in-law's six-year old boy was attacked by a disease called morphea…

Ray N: Watermelon Stomach This past Friday I had two more pints of blood, making nineteen in all. I felt like King Kong from Saturday until Monday afternoon…

Raymond: Surviving Son of Scleroderma Patient On September 31, 2002, my mother, Claudia Girouard, lost her courageous fight with scleroderma…

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…

René: CREST/Raynaud's I went through a hyperbaric chamber…

R.G.: Raynaud's and chilblains Within just a few minutes of vigorous swimming all of the chilblains had disappeared…

Rhea: Morphea The giant spot on my back started out as Morphea and then started gaining more qualities of Linear Scleroderma…

Rhonda L: Systemic Scleroderma I have recently been diagnosed with sclerodema, and am still trying to wrap my brain around this…

Rick W: Morphea Scleroderma I was diagnosed with localized scleroderma by a dermatologist in 1999 at age thirty-three. It started out as what I thought was a small bruise on my abdomen and grew into a shape larger than a dollar bill…

Robert B: Morphea I am tired all the time. My foot is swollen and sore making it hard to walk…

Roberta: Morphea (Italy) I am a woman of twenty-five years of age, and two days ago I saw the doctor about a mark on my right forearm, which is compatible with the diagnosis of Morphea…

Roberta A: Systemic Sclerosis/Overlap Two rheumatologists both said because I did not have thick skin I did not have systemic sclerosis…

Robin: Difficult Diagnosis My rheumatologist said I have scleroderma, but just lately she said now she is not sure if it is that or fibromyalgia…

Robin E: Scleroderma, Lupus and Raynaud's I do not know if I can describe what I am going through because it changes each week, if not each day…

Robin H: End-Stage Renal Disease (ESRD)/Transplant Recipient It has been almost two years now since my kidney transplant. I am doing better than ever…

Robin M: Daughter with Linear Scleroderma En Coup De Sabre While we have met with a pediatric plastic surgeon, my daughter has opted to not have any surgery at this time…

Robin T: CREST Syndrome My hands were always cold and turning white, purple then red then back to normal, and hurting. Then I developed a sore on my finger tip that wouldn't go away…

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

Rodriguez: Linear Scleroderma Little by little pigmentation is coming back into my leg and there are times I still feel joint pain but I have gotten through it…

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…

Roni: Morphea About six years ago I was told that the mark on my ankle and just up to the bottom of my calf was morphea 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…

Rose M: CREST Syndrome I was finally correctly diagnosed with CREST after two years of thinking I was going crazy…

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…

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…

Rouge: Limited Systemic Sclerosis (Italy) I am thirty-five years old, and up to two years ago I thought I was only suffering from Raynaud's Phenomenon…

Rubie: Linear Morphea Scleroderma I was referred to a dermatologist and was finally diagnosed with linear morphea at the age of four…

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

Go to Section S: Scleroderma Stories in English
 
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

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.

 

SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

 
The most important thing in the world to know about scleroderma is sclero.org!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.