| Stories by Month Posted |
| 2008: Jan Feb-Sep Oct Nov 2007: Jan-May Jun Jul Aug Sep Oct-Dec 2006: Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov-Dec 2005: Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec 2004: Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec 2003: Jan -Apr May Jun Jul Aug Sep Oct Nov Dec 2002: Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec 2001, 2000, 1999 |
| 2001 Stories by Month Posted | ||||||||||||
| ||||||||||||
| January 2001 | ||||||||||||
| (Italiano) Maria Cristina: Sclerodermia Sistemica Progressiva Mi stata diagnosticata all'et di 14 anni una Sclerodermia Sistemica Progressiva ad uno stadio molto avanzato con una aspettativa di vita minima (si parl di 6 mesi)... | ||||||||||||
| Update: Cathy: Probable CREST Scleroderma Compared to last year, my life has made a complete turn around because of the fine treatments I have been getting... | ||||||||||||
| K. Thompson: Daughter of Scleroderma Patient He had been having problems with his heart and had to have stents put in for blocked arteries... | ||||||||||||
| 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... | ||||||||||||
| 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... | ||||||||||||
| Dot: Mother of Morphea/Linear Patient I have read many of the stories posted and have felt encouraged by them... | ||||||||||||
| Cathy B: Spouse of Scleroderma Patient I am looking for other wives who might be in the same need I am in, who also want someone to talk to and share stories or ideas with... | ||||||||||||
| (Italiano) Franco: Sindrome di Sjögren Sono Franco ho 57 anni da tre anni mi hanno diagnosticato la Sindrome di Sjögren, ma in reata' sono quasi trenta anni che ne soffro. | ||||||||||||
| Christine: Morphea and Lichen Sclerosus et Atrophicus I would love to know if there are any other solutions out there. Even ways to cover up a bit when I am in my bathing suit... | ||||||||||||
| Linda: Morphea Scleroderma I wonder if any of you who read this, know any methods of treatment... | ||||||||||||
| February 2001 | ||||||||||||
| In Memory of Joanne: Diffuse Scleroderma We planned to meet at the Chandler Arizona support group meeting. However, Joanne passed away January 19th, so I never did get to meet her in person... | ||||||||||||
| Gail: Undifferentiated Connective Tissue Disease (UCTD) They did a series of tests and blood work and found I had Interstitial Cystitis, a positive ANA, and gastrointestinal dysmotility... | ||||||||||||
| Liz: Localized Scleroderma: Morphea Over the next eight months I was misdiagnosed by three different doctors who told me I had Tinea Versicolor (a type of fungus)... | ||||||||||||
| (Italiano) Alex: Scleroderma Localizzata Sono una donna di 34 anni e sono affetta da sclerodermia localizzata da 13... | ||||||||||||
| Update: Sue Ann: Mother of a Son with Scleredema Since Christmas of 2000 the left side of my son's face thickened even more. Feburary 9 he was told he has cataracts in both eyes... | ||||||||||||
| (Italiano) Eugenia: Morphea Mi chiamo Eugenia ed abito in provincia di Ferrara. Da diversi anni soffro di sclerodermia a chiazza detta Morphea... | ||||||||||||
| Julie: Morphea Scleroderma I am now thirty-two years old and have had morphea for almost twenty years. Unfortunately, it has not stopped as it has taken over a lot of my body... | ||||||||||||
| Jennifer B: Morphea Scleroderma I am now 24 years old. I still have the permanent "bruise" on my left knee... | ||||||||||||
| Update: Judy Rose Thompson: Diffuse with CREST I recently published my second novel, A SWITCH IN TIME. It is a historical, spiritual and futuristic adventure story where one of my main characters gets scleroderma... | ||||||||||||
| Dawn: Confirmed Early Scleroderma I am awaiting surgery for what was thought to be a right rotator cuff injury. I now understand this may, in fact, be a symptom of my scleroderma... | ||||||||||||
| Greg: Diffuse Scleroderma and Lung Transplant Patient I asked Dr. Frank C Arnett to see if I was a candidate for a lung transplant... | ||||||||||||
| March 2001 | ||||||||||||
| 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... | ||||||||||||
| (Italiano) Gabriela: Scleroderma Diffuse Mi chiamo Gabriela, ho 17 anni e abito a Londra. Sono stata dignosticata con Scleroderma e Raynaud's Phenomenon quando avevo 15 anni.. | ||||||||||||
| Jenny: CREST Scleroderma My symptoms started to appear over ten years ago, but I was only recently diagnosed... | ||||||||||||
| Karen G: Spouse of Scleroderma Patient My husband has scleroderma and we would like to know if anyone has ever had an Iloprost infusion... | ||||||||||||
| Update: Dot: Mother of Morphea/Linear Patient Cole was diagnosed with linear morphea. We've been seeing a pediatric dermatologist... | ||||||||||||
| April 2001 | ||||||||||||
| Pamela W: Morphea Scleroderma My problem started as what I thought was a bruise about the size of a dime under my arm... | ||||||||||||
| (Update) (Italiano) Gabriela: Scleroderma Diffuse Voglio conoscere altre persone con la sclerodermia, nessuno con questa malatia si deve nascondere... | ||||||||||||
| (Italiano) Cristinia: Figlia di una donna affetta dalla sclerodemia Da 9 anni soffre di questa malattia e da 6 segue una cura a Padova, la plasmoferesi, con questa cura finalmente ha smesso di soffrire... | ||||||||||||
| Sonya: Daughter-in-Law of Diffuse Scleroderma Patient I think that we all need to give her permission to die. I believe CB is hanging on for everyone else... | ||||||||||||
| Desiraye: Linear Morphea When I was 14 years old, I spent the whole summer laying out in the sun. I developed a white patch that my mother thought was ringworm... | ||||||||||||
| Irja: CREST, Limited Scleroderma I'm a 34-year-old woman from the land of Santa Claus, Finland. Ive had CREST since 1998... | ||||||||||||
| Archie Bailey: Scleroderma: Sue's Story Time has passed since Sue's death. Only those who have experienced the grieving process can understand the profound agony death presents to friends and loved ones... | ||||||||||||
| 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... | ||||||||||||
| Update: Sheila: CREST with Limited Scleroderma Here's the big news for me: I am engaged to be married at the end of August... | ||||||||||||
| Doreen: Mother of Morphea Scleroderma Patient My daughter Corinne was diagnosed with Morphea when she was six years old. She is now 22... | ||||||||||||
| Karen A: Morphea Scleroderma I am a 34-year-old female who has been bounced around for 2-1/2 years from oncologists to rheumatologists... | ||||||||||||
| Mo: Mother of Undiagnosed Girl We have an 8-year-old daughter whose symptoms have stumped our pediatrician... | ||||||||||||
| Jenny M: Morphea Scleroderma I was told it was a fungus, then that it was clearly all in my head. I went to a dermatologist who told me I had vitiligo, and then that it was lichen sclerosis... | ||||||||||||
| May 2001 | ||||||||||||
| Jackie: Scleroderma, CREST, and Pulmonary Hypertension We were identical twins, and she died in 1988 from kidney failure. We both started with Raynaud's... | ||||||||||||
| Update: Trish: Spouse of Diffuse Scleroderma Patient He is now on Worker's Compensation, because he was exposed to silica dust... | ||||||||||||
| Katy: Morphea Scleroderma It took nearly a year to get my diagnosis. The first two doctors told me I had ringworm... | ||||||||||||
| Tonya: Morphea Scleroderma I have avoided the sun like the plague since my initial diagnosis and am wondering if it will help to hide the brown spots by tanning? | ||||||||||||
| Update: Sonya: Daughter-in-law of Diffuse Scleroderma with CREST Patient On May 7, 2001, scleroderma took CB from us. My husband, a sister, and both of CB's parents were by her side... | ||||||||||||
| Krys: Morphea Scleroderma I am still not comfortable with the scar but I have been free of scleroderma for quite some time... | ||||||||||||
| Judy King: CREST Syndrome A neurosurgeon performed a Digital Sympathectomy on my right hand and, thank God, my finger was saved... | ||||||||||||
| Update: Sonya: Daughter-in-law of Diffuse Scleroderma with CREST Patient I can't describe the feeling I get seeing her so helpless and ill. I long to hear her speak just once more. I want to tell her that I love her and will see her again one day... | ||||||||||||
| Update: Jenny M: Morphea Scleroderma Although I am finding this to be the most terrifying and most terrible time in my life (even more so than when I miscarried), I am finding a little bit of self-acceptance... | ||||||||||||
| Phyllis K. Phillips: Scleromyxedema I have created a website, Scleromyxedema.com, to share my experience with others living with this scleroderma-like disease and to provide a forum/network of support... | ||||||||||||
| June 2001 | ||||||||||||
| Update: Jo: Mother of a Child with Morphea Scleroderma The physical therapist recommended a built-up heel for Rachel's shoe on the leg with morphea... | ||||||||||||
| Iris: Family History of Scleroderma Is there anyone else who feels that their family has a history of scleroderma? | ||||||||||||
| Jacqueline: Morphea Scleroderma I have multiple grayish/brown/ and white spots on my sides, stomach, and back. The one on my left side is huge... | ||||||||||||
| (Italiano) Pino: Sospetta Scleroderma Scrivo per mia madre. Siamo entrati da poco in questo tunnel. Tutto inizia l'anno scorso con la diagnosi della sindrome di Raynaud : mani indolensite, colore violaceo... | ||||||||||||
| (Italiano) Roberto: La cognata che non ho mai conosciuto Questa non la mia storia personale, ma la storia di Barbara, la sorella della mia fidanzata, che non c' pi per poter raccontare la sua storia, e vorrei farlo io al posto suo... | ||||||||||||
| Update: Jo: Mother of a Child with Morphea Scleroderma My daughter is now off of the prednisone and is only on her weekly dose of methotrexate. However, the leg that has been affected is still significantly smaller than her other leg... | ||||||||||||
| July 2001 | ||||||||||||
| (Italiano) Giò: Sclerodermia sistemica progressiva Sono sclerodermia dal 1990. Attualmente la mia terapia, adalat, cortisone, ascriptin, calci... | ||||||||||||
| Deborah 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? | ||||||||||||
| Linda F: CREST Scleroderma, Rheumatoid Arthritis, Fibromyalgia, Hashimoto's Thyroiditis, Hematoma, and Osteomyelitis I need to tell you all the gory details so you can truly understand what a miracle it is that I am alive today... | ||||||||||||
| August 2001 | ||||||||||||
| (Italiano) Passanto: Sclerodermia Salve, ho 34 anni e vi contatto in merito ad un problema di sclerodermia che mi riguarda di persona... | ||||||||||||
| Meghann: Morphea Scleroderma I am 16 now and have had morphea for about 2 to 3 years. When I first started to develop small red spots on my trunk... | ||||||||||||
| Gina: Morphea or Linear Scleroderma I really try to put it out of my mind and be thankful that it is not systemic. But, every time I notice new areas turning color it really worries me... | ||||||||||||
| Mo: Mother of Undiagnosed Girl We still do not know what's up. We were referred to a dermatologist. He said that it looked like Lupus... | ||||||||||||
| 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... | ||||||||||||
| 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... | ||||||||||||
| Toni: Spouse of Stem Cell Transplant Survivor Jeff is now 17 months past his stem cell transplant and to look at him you'd never know he was sick... | ||||||||||||
| Carol C: CREST Syndrome Scleroderma and Raynaud's have not robbed me of a fulfilling career. For as long as I can remember I always felt cold... | ||||||||||||
| September 2001 | ||||||||||||
| Monika K: Morphea Scleroderma I got a bad sunburn on my back and shortly after the burn healed my Mom noticed a football shaped blotch... | ||||||||||||
| Jennifer Gayton: Mother of Morphea Patient Last May we noticed what looked like a bruise on our daughter's stomach... | ||||||||||||
| Update: Katy: Morphea Scleroderma Unfortunately I have more spots and the original ones are bigger... | ||||||||||||
| Carla: CREST Syndrome When I read some of these stories, they scare the devil out of me. Is this really that bad?... | ||||||||||||
| Easter: Scleroderma My name is Easter, and I'm Iraqi. About 16 years ago I began my struggle with scleroderma... | ||||||||||||
| Patient and Caregiver Stories (Master Listing) | ||||||||||||
| 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) on my hands... | ||||||||||||
| October 2001 | ||||||||||||
| Stephanie: Morphea Scleroderma I have bruise-like patches all over the trunk of my body... | ||||||||||||
| Laura W: Scleroderma, Sjögren's, Raynaud's and IBS I am glad to finally have an answer after years of tests, with no results... | ||||||||||||
| Brenda: Limited Scleroderma, CREST, Raynaud's I have been sick for five or six years, telling doctors how much pain I was in and that my fingers are sensitive to cold... | ||||||||||||
| (Italiano) Gianna S: Sclerodermia Sono figlia di una signora a cui hanno diagnosticato la sclerodermia in un ospedale della mia citt... | ||||||||||||
| Update: Pam: Systemic Scleroderma Oral antibiotics did a great job on my muscular breakdown. Yipee, I can walk again without that darn walker... | ||||||||||||
| Andie Friend: Morphea I want to share my story with scleroderma that is nearly eighteen years old now... | ||||||||||||
| Update: Sharon: Limited Scleroderma, CREST, Sjögren's and Pulmonary Hypertensio n Unfortunately it revealed that I now have Secondary Pulmonary Hypertension... | ||||||||||||
| November 2001 | ||||||||||||
| Joe S: Morphea Scleroderma I am 42 and have had Morphea for about 15 years now. I have too many bruise-like marks on my body to count... | ||||||||||||
| 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... | ||||||||||||
| Denise: Systemic Sclerosis, CREST and Raynaud's It all started when I was 16 years old. I was having awful pains in my hands and feet... | ||||||||||||
| Shirley S: Surviving Spouse of Scleroderma and Lupus Patient My husband John had scleroderma, and he passed away on November 8, 2001... | ||||||||||||
| Update: Brenda: Limited Scleroderma, CREST, Raynaud's and Fibromyalgia I went back to the doctor on October 19th and was told I also have Fibromyalgia... | ||||||||||||
| Cara: Morphea Scleroderma I recently saw a rheumatologist who says it's limited or localized scleroderma... | ||||||||||||
| December 2001 | ||||||||||||
| Dora: Linear Scleroderma I was diagnosed with linear scleroderma (en coup de sabre) in Romania 41 years ago... | ||||||||||||
| Jean L: Scleroderma I have been under Dr. Wigley's care at Hopkins in Baltimore. Currently I am having a problem with severe itching and burning... | ||||||||||||
| Bill M: Localized Scleroderma All I want to say is that your life will go on. Do what makes you happy: pray, fish, ride motorcycles, whatever... | ||||||||||||
| Update: Sue Ann: Mother of Son with Scleredema My son's face is still thickening from scleredema. His cardiologist said next time his heart beats irregular... | ||||||||||||