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: D

Daisy: Sjogren's, Spondyloarthritis and Fibromyalgia Everything started two years ago, with a pain in my knee for which I got surgery…

Damaris: Morphea I am wondering if there is any treatment for this…

Danene: Daughter of CREST Scleroderma Patient Especially knowing that your loved one may eventually die from this disease…

Dani: Chronic Adult-Onset Asthma I wish I knew about filing for disability for such a illness. I am not sure if Asthmatics are covered in this area…

Danie: CREST Scleroderma My parents always thought of it as an excuse to miss school. It all started with my hands…

Daniel B. Koch: Mixed Connective Tissue Disease with Scleroderma Two months after I was born the doctors noticed that my growth rate was very slow…

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…

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…

Darlene: Diffuse Scleroderma (New Jersey) Now that I have become more knowledgeable about scleroderma, I feel I can cope with it better…

Dave S: Undiagnosed and Brother of Scleroderma Patient A small black spot appeared on my left index finger around Easter of 2004. It has not grown in the past six months, but it also has not healed…

David B: Raynaud's I am fifty-one years old and suffer with Raynaud's, bipolar affective disorder, high anxiety and phobias for which I am unable to take medication…

Dave Wilcher: Diffuse Scleroderma Early in 1998, I noticed my hands were swollen. I had a hard time gripping the handle of my coffee cup…

Davie's Mom: Mother of Linear Scleroderma Patient Davie could be a candidate for skin grafts. If anyone has tried this I would love some input…

Dawn: Confirmed Early Scleroderma I am awaiting surgery for a rotator cuff injury. I now understand this might be a symptom of my scleroderma…

Dawn M: Linear/Systemic Scleroderma My family and I were informed by the doctors, that the localized/linear form of scleroderma that I was diagnosed with, would never progress into the potentially fatal, systemic form…

Dawn S: CREST Syndrome The majority of doctors that I have seen have been unhelpful, unsympathetic and downright rude to me…

Dawna: Raynaud's with CREST? I am in my mid forties and was diagnosed with Raynaud's when I was about twenty-two…

Daynelle: Morphea Needless to say, I do not want anymore spots and I am terrified of this spreading…

Debbie: CREST Here's a copy of a letter I sent to my rheumatologist…

Debbie B: Mother of Linear Scleroderma Patient (Australia) The disease is in her muscles and the right leg has stopped growing. Her right foot is 2 cm shorter then her left and she is always in pain…

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…

Debbie W: Mother of Linear Scleroderma Patient Because my daughter's face was being affected so severely with atrophy, hair loss, and partial loss of her eyebrow we began a treatment program…

Debbie M: CREST Scleroderma, Systemic Lupus, Rheumatoid Arthritis, Ankylosing Spondylitis, and Fibromyalgia When we are given the CREST diagnosis, does that mean that we definitely will have the tight skin eventually?

Debby: CREST Scleroderma It was then everything added up— that I did not have several different conditions, but rather they were all part of the CREST…

Debby B: Systemic Sclerosis I began experiencing unexplained aches and fatigue, along with swelling and numbness in my hands, at the end of 1999…

Deborah Peck: Diffuse Systemic Sclerosis I first noticed my hands turning white in 1992 after my father's funeral…

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…

Debra K: Daughter of Scleroderma Patient (Canada) I wish that there was something I could give her from my healthy body…

Debra R: Mother of Emma, Linear Scleroderma Patient It is so good to have support and be able to ask questions and have them answered. Now I can explain to Emma what is going on…

Debs B: Diffuse Systemic Sclerosis (England) This seems to be a long list of ailments that I have been coping with for years, so the addition of diffuse systemic sclerosis did not really panic me…

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…

Deedra: Linear Scleroderma In the course of two years the scleroderma spread from under my knee to the top of my thigh…

Dee: Daughter of Scleroderma Patient Three years ago my mother was diagnosed with scleroderma. My aunt died of scleroderma last year…

Dee B: Limited Scleroderma/CREST Syndrome I also had the problem with people saying I was a hypochondriac, as at that stage all the doctors I saw found nothing wrong with me, but I constantly felt weary and ill…

Del: Deaf with Systemic Scleroderma It's my hope and wish to make contact with someone else who is also Deaf with SD…

Denise: Systemic Sclerosis and CREST It all started when I was sixteen years old. I was having awful pains in my hands and feet…

Denise E: Diffuse Scleroderma I was first diagnosed with diffuse scleroderma in February 2002, but my symptoms began subtly in the summer of 2000…

Desiraye: Linear Morphea When I was 14 years old, I spent the whole summer laying out in the sun. I developed a white patch…

Dian H: Diffuse Scleroderma Having to take disability from work is the hardest thing I have ever done. Working at least kept my mind on other things besides the pain…

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…

Dienne: Morphea plus possible CREST I finally saw a rheumatologist about 6 years ago, who told me I had Raynaud's and Telangiectasia (spider veins)…

Dimitra Stafilia: Daughter of Systemic Scleroderma Patient I am the ISN Greek Translator. My mum has been suffering from scleroderma since 1992…

D.M.: Son of Mother with Doubtful Diagnosis (Kosovo, Yugoslavia) I will do my best to help my mother. She is the only person I have in this world…

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…

Dominica: Linear Morphea They say everything is fine but I think it's only gotten worse and feel that nobody wants to help me…

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…

Donato: Systemic Scleroderma with Raynaud's (Italy) At the beginning I didn't know what it was, but afterwards I got informed and I realized how serious it was…

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: CREST, Raynaud's, possible Fibromyalgia I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998…

Donna C: Undifferentiated Connective Tissue Disease (UCTD) I am beginning to get tired of going for test after test and not find a specific reason for my symptoms…

Donna D: Systemic Scleroderma No one shares a timeline with me or will tell me what to expect next…

Donna H: CREST, Autoimmune Hepatitis, Fibromyalgia I also have degenerative disc disease, osteoarthritis, anxiety/depression/panic disorder, irritable bowel…

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…

Donna S: Odd Version of Scleroderma My dermatologist has spoken with numerous dermatologists across the country, and they have not heard of my particular case of scleroderma. They also have not heard of blisters being associated with scleroderma in any form…

Dora: Linear Scleroderma I was diagnosed with linear scleroderma (en coup de sabre) in Romania 41 years ago…

Doreen: Mother of Morphea Scleroderma Patient My daughter Corinne was diagnosed with Morphea when she was six years old. She is now 22…

Doris: Morphea I was diagnosed with morphea in 2006. It started with itching that would not stop and now after a year and a half later it is still itching and painful…

Dorne: Overlap and Possibly CREST Since 2002 I have been diagnosed with Lupus, Sjogren's Disease, B12 deficiency, mild pulmonary hypertension, Celiac disease, Type II diabetes and now the specialists are seriously talking about CREST…

Dorothy: Scleroderma CREST For this reason I convened a support group in South Africa to help encourage many others with scleroderma…

Dot: Mother of Morphea/Linear Patient I have read many of the stories posted and have felt encouraged by them…

Dotty: Scleroderma, Sjögren's, Parotid Lymphoma I have taken control of my life and I just know there is a wonderful future for me…

Dwight: Surviving Son of Scleroderma Patient My dear mother, Drema L Shaver, passed away one year ago today…

(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 E-G: 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.