Digital Ulcer Patient and Caregiver Stories
Allen's Mom: Son has Scleroderma With his tightness of skin he has a very hard time bending, walking up the stairs and for the most part he cannot walk for more than a few minutes without his legs giving out…
Angel G: Systemic Scleroderma with Raynaud's Phenomenon I noticed that the middle finger on my right hand had turned so dark in color that it was practically black and I actually thought there was ink on it and tried to wash it off. Oh, if only the remedy had been so easy…
Bren: CREST Scleroderma I had three ulcers on my hands from Raynaud's. I had Botox injections for them, and by the next day they were gone…
Christene: Limited Scleroderma I was diagnosed when I was just nineteen and at that time it was one of the scariest moments of my life…
Daphne M: Daughter of Limited Systemic Scleroderma Patient She has had symptoms of reflux, which has caused her to throw up every night for over ten years. Her hands turn blue and are very sensitive to hot and cold. She has been developing ulcers on her fingers too. She was admitted to CCU last week with difficulty swallowing and breathing…
Deborah T: Scleroderma No doctor seems to help me. My doctor just says I have so many problems its hard to know what to do…
Denise E: Diffuse Scleroderma I was first diagnosed with diffuse scleroderma in February 2002, but my symptoms began subtly in the summer of 2000…
D.M. Hoffe: Progressive Systemic Sclerosis (Scleroderma CREST) After an endoscopy it was discovered I had a Watermelon Stomach…
Dodo: Limited Systemic Scleroderma (Italy) The tips of my fingers turned cold, and then became cyanotic, always hurt and in the end they became ulcerated…
(Italiano) Dodo: Sclerodermia Sistemica Limitata (Italia) Ho iniziato ad avere alcune punte delle dita delle mani molto fredde, che in pochi giorni diventarono prima cianotiche, sempre piú doloranti e infine presentarono delle ulcere…
Doni: CREST Syndrome The doctors were always interested like, "Wow look at this," but since I had no insurance, they would not touch me…
Donna M: CREST Scleroderma It all started with an infection at the end of my index finger in December 1999. My finger became red, inflamed and sore to touch…
Dorothy: Scleroderma CREST For this reason I convened a support group in South Africa to help encourage many others with scleroderma…
Elizabeth G: Diffuse Scleroderma I was fired from my job since I cannot work as I used to…
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…
Kristi U: Systemic Scleroderma We sold our motel business because it hurt me so bad to work each and every day…
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…
Leslie R: Scleroderma, Vitiligo, Lupus, Anemia, Hypertension and Type 2 Diabetes He told me that I have scleroderma and explained what this disease is about. After suffering so long I finally got some answers…
Lynn F: Raynaud's and Scleroderma So on November 11th my finger was amputated just above the top knuckle. Unfortunately, an infection set in…
Mariposa: Progressive Systemic Sclerosis I have finger ulcers, also a second degree esophagitis, but I should say that about a year ago it started receding thanks to the doctors that follow my case…
Matilda: Systemic Scleroderma (South Africa) I don't think there is a lot of support in South Africa and I would actually like to start a group where people with the same disease can meet and discuss how they cope with the illness…
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…
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…
Nathalie: Lupus/Scleroderma I arrived at the hospital with two black fingers. They had gangrene and I was very worried about having an amputation…
Rose M: CREST Syndrome I was finally correctly diagnosed with CREST after two years of thinking I was going crazy…
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…
Sbirulino: Limited Systemic Sclerosis, First Stage Biliary Cirrhosis (Italy) They diagnosed Raynaud's Syndrome, until there was amputation of the first and second phalanges, which caused total invalidism…
(Italiano) Sbirulino: Sclerosi Sistemica variante Limitata, Cirrosi Biliare Primitiva (Italia) Mi avevano diagnosticato la sindrome di Reynaud, fino all'autoamputazione delle Ie e IIe falangi arrivando a portarmi ad una invalidità totale del 100%…
Sheila: CREST with Limited Scleroderma I felt really scared, confused, and dehumanized in the process of my diagnosis…
Sibel: Scleroderma and Raynaud's (Turkey) Changes in my skin were making me look different in the mirror…
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…
Star S: Morphea and Systemic Scleroderma I was diagnosed with morphea at age seven. Now at age thirty-three, I have recently developed systemic scleroderma with gastrointestinal manifestations, Sjogren's syndrome, inflammatory arthritis, malabsorption…
Susie: CREST Syndrome I have had CREST syndrome for the past eight years. My specialist is Dr. Frederick Wigley, from Johns Hopkins…
Susie L: Raynaud's (and Scleroderma, too?) I have been told that I "probably" have scleroderma in the early stages by one doctor, that it is unlikely by another, and that I almost certainly do have it by yet another…
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…
Teresa: Scleroderma I was just diagnosed a few hours ago. Tears are streaming down my face…
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…
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.