Patient & Caregiver Stories: Cardiac (Heart) Involvement
Amanda: Diffuse Scleroderma Systemic Sclerosis I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007…
Anastasia: Surviving Granddaughter of a Diffuse Scleroderma Patient Traveling to a different hospital finally we heard scleroderma…
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…
Angiola: Progressive Systemic Scleroderma (Italy) I would very much like to find other people that find themselves in a similar situation…
Anita A: Sister of Systemic Scleroderma Patient She has had a heart transplant and a kidney transplant. It has been amazing to our family the courage and stamina that she has through all that she has endured…
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…
Betty M: CREST Syndrome I was in so much pain for so long that I tried to take my own life. This only ended me up in a mental institution where I was given shock treatments that wiped out my whole memory…
Carol Langenfeld: Diffuse Scleroderma People tell me that I have earned my credentials as a "certified patient" the hard way…
Cheryl: Surviving Daughter of Systemic Sclerosis Patient Around three o'clock in the morning when all her pain medication finally gave her a reprieve, she looked over and asked me to come sit next to her so that she could see me…
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…
Caroline: Niece of Scleroderma Patient We are trying to get my aunt into a nursing home…
Debby B: Systemic Sclerosis I began experiencing unexplained aches and fatigue, along with swelling and numbness in my hands, at the end of 1999…
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…
Iris: Family History of Scleroderma Is there anyone else who feels that their family has a history of scleroderma?
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…
Jamie: Surviving Spouse of Progressive Systemic Sclerosis Patient My husband Jerry, age 35, was diagnosed with scleroderma in January 2000…
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…
Judy Dee: Diffuse Scleroderma My skin began to harden and turn a shade of brown…
K. Thompson: Daughter of Scleroderma Patient He had been having problems with his heart and had to have stents put in for blocked arteries…
Karen C: Daughter of Diffuse Scleroderma Patient (Chile) My father is Juan, he's fifty-two and suffers from diffuse scleroderma…
Kathy GR: Scleroderma Patient The doctor who had been doing the nerve blocks had told me I had scleroderma, but never mentioned that I needed to see a rheumatologist…
Laurie (Bioteach): CREST Syndrome My first symptoms of this disorder began with Raynaud's when I was in my mid twenties…
LaVonne: Surviving Mother of a Daughter with MCTD My daughter died of MCTD in March 2000, at thirty-five years of age…
Lindsey: Eosinophilic Fasciitis (EF) My skin remains very thick and constricted…
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…
Marie C: Surviving Spouse of Scleroderma Patient I can only say to other loved ones that, indeed, it was the hardest thing I have ever gone through…
Marilyn: Diffuse Scleroderma Being that I was a nurse you would think that I should have picked up on this myself…
Moroni: Husband with Systemic Sclerosis My husband was diagnosed with this illness two years ago. It all began with a cardiac arrhythmia. I took him to a cardiologist who performed an echocardiogram, where he realized that his heart had some damage…
(Español/Spanish) Moroni: Esposa de Paciente con Esclerosis Sistémica Mi esposo fue diagnosticado con esta enfermedad hace dos años, se le manifestó con una arritmia cardiaca, lo llevé a un cardiólogo y éste le realizó un ecocardiograma y se dio cuenta de que su corazón presentaba una restricción…
Nettie: Systemic Scleroderma, CREST and Raynaud's Up until now I have done very well at pretending not to be "ill"…
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..
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…
Sara: Surviving Daughter of Scleroderma Patient This is the story of my mother who died on March 18, 1996, from complications of scleroderma…
Sorin: Cousin of Undiagnosed Patient I live in Romania and I have a cousin who has symptoms…
Stefan: Progressive Systemic Sclerosis I have been moving towards this diagnosis beginning in 1987 with a heart failure resulting from cardimyopathy…
Sue Ann: Mother of Son with Scleredema Scleredema is an illness similar to scleroderma. It is also known as Scleredema Adultorum, Scleredema Adultorum of Buschke, Scleredema Diabeticorum, and Scleredema Diabeticorum of Buschke…
Susan Raby-Dunne: Surviving Daughter of Scleroderma Patient My mother lived a fairly full and productive life for over thirty years after her diagnosis. She danced with my father and they were accomplished ballroom dancers…
Susie: CREST Syndrome (Update) They asked me to donate three pieces of my heart and I agreed to do this, as I have always been a strong advocate to help others…
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…
Main Story Listings by type of symptoms. ISN.
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