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January-May 2007
Lina: Morphea Scleroderma I am twenty-five years old and two weeks ago I was diagnosed with scleroderma. I went to see a rheumatologist and he said my case wasn't very important...
(Español/Spanish) Lina: Esclerodermia Morfea Tengo 25 años y hace 2 semanas me diagnosticaron esclerodermia. Fui con reumatólogo y le restó importancia a mi caso...
Julian: Morphea About thirteen years ago I got a little white spot in my thigh (coin-like)...
(Español) Julian: Morfea Hace como 13 años me salio una mancha blanca pequeña (en forma de moneda)...
Claudia: Systemic Scleroderma Nature is wise, no doubt about it, when something is wrong with our body we have to pay attention...
(Español) Claudia: Escleroderma Sistemica No cabe duda que la naturaleza es sabia y que cuando algo falla en nuestro cuerpo u organismo hay que hacerle caso, puesto que mi novio inicio con síntomas que a él le parecieron insignificantes en un momento...
Gingy: Localized Scleroderma (Italy) In September 2006 I was told that I might have localized sclerodermia after I discovered dark marks and my skin hardened in my left forearm...
(Italiano) Gingy: Sclerodermia Localizzata A settembre 2006 mi viene detto che potrei avere la sclerodermia localizzata poiché sull'avambraccio sinistro ho la pelle "dura" e delle macchie scure...
Emmi: Linear Scleroderma and Vitiligo My parents thought I was going to die, and doctors here in Finland did not really know what to do with me. There are not many scleroderma cases in Finland...
Fykah: Systemic Lupus Erythematosus (SLE) I am recently diagnosed with Lupus, yet some complications are still under-diagnosed...
Marina F: Sjogren's Syndrome and Vitiligo (Italy) For quite a few years now I have had problems such as eczema in my ear, vitiligo, nodules in the thyroid, dry eyes with a positive Schirmer's test, and vertigo...
(Italiano) Marina F: Sindrome di Sjogren, Vitiligo Ho 47 anni e da diversi anni soffro di vari problemi quali: eczema alle orecchie, vitiligine, noduli tiroidei, secchezza oculare con test di schirmer positivo, e vertigini...
Mary B: Scleroderma En Coup de Sabre I feel like it is tearing my head open. Sometimes I get headaches, and I believe it is because of this illness...
(Español/Spanish) Mary B: Esclerodermia en Golpe de Sabre Por el contrario siento que se me está haciendo una enorme brecha en la cabeza. A veces me dan dolores de cabeza y creo que es por causa de esta enfermedad...
Rosebud: Diffuse Scleroderma My hands are the worst. They are completely swollen, red, itchy, with burning sensation and in pain constantly...
Kon: Lichen Sclerosus et Atrophicus The doctor told me to use tacrolimus ointment and take plaquenil pills. I had an improvement the first two months, but the condition still remains...
Babi: My Boyfriend has Scleroderma (Italy) He has to go to the hospital for at least four days and get a sort of chemotherapy...
(Italiano) Babi: Sindrome della Sclerodermia Non so dire di preciso di che tipo è so solo che almeno una volta al mese deve andare in ospedale e stare li per almeno 4 giorni e fare una specie di chemioterapia...
Maggie M: Lichen Sclerosus et Atrophicus and Generalized Morphea I had to seek medical help when I realized that it was spreading and getting considerably worse...
(Update) Bill: Diffuse Scleroderma I don't have much of an appetite, have difficulty swallowing and fill up quickly so eating just isn't as appealing as it used to be...
Julian: Morphea About thirteen years ago I got a little white spot in my thigh (coin-like)...
(Español) Julian: Morfea Hace como 13 años me salio una mancha blanca pequeña (en forma de moneda)...
Claudia: Systemic Scleroderma Nature is wise, no doubt about it, when something is wrong with our body we have to pay attention...
(Español) Claudia: Escleroderma Sistemica No cabe duda que la naturaleza es sabia y que cuando algo falla en nuestro cuerpo u organismo hay que hacerle caso, puesto que mi novio inicio con síntomas que a él le parecieron insignificantes en un momento...
Gingy: Localized Scleroderma (Italy) In September 2006 I was told that I might have localized sclerodermia after I discovered dark marks and my skin hardened in my left forearm...
(Italiano) Gingy: Sclerodermia Localizzata A settembre 2006 mi viene detto che potrei avere la sclerodermia localizzata poiché sull'avambraccio sinistro ho la pelle "dura" e delle macchie scure...
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...
(Italiano) Mariposa: Sclerosi Sistemica Progressiva Ho ulcere sulle dita, anche attualmente una esofagite di secondo grado,ma devo dire che da un anno a questa parte si è bloccata grazie a i medici che mi seguono...
Miguel: Linear Scleroderma I am twenty-seven years old and some months ago I went to see a doctor because I had a spot on my left leg...
(Español/Spanish) Miguel: Esclerodermia Lineal Hace unos meses fui a ver a un médico porque tenía una mancha en mi pierna derecha, no me molestaba pero mi piel comenzaba a endurecerse en esa área...
Bernarda: Mother of a Localized Morphea en Coup de Sabre Patient She still is not fully conscious of what is happening, while I am devastated...
(Español/Spanish) Bernarda: Morfea Localizada-Golpe de Sabre Fue un golpe tremendo para mí, ella aún no toma plena conciencia de lo que le pasa, yo estoy destrozada...
Martha: Sister of Scleroderma Patient My sister's symptoms are mainly: tiredness, and sometimes stomach problems...
(Español/Spanish) Martha: Hermana de Paciente con Esclerodermia Ella padece está enfermedad desde niña...
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...
(Update) Karen C: Daughter of Diffuse Scleroderma Patient But now I am writing to tell you this pain has grown even more, since my beloved father left this world...
(Español/Spanish) (Update) Karen C: Hija de Paciente con Esclerodermia Difusa Pero esta vez estoy escribiendo para contarles que este dolor ha crecido aún más ya que mi papito se fue de este mundo...
Klaas: Scleroderma Graft-vs-Host Disease (GVHD) So I would like to know if, and when, I will be able to walk again...
(Spanish/Español) Klaas: Sclerodermia da GVHD Essiste un modo per capire se ci sono delle speranze e quali sono...
Karina: Mother of Morphea Patient The doctor says it will be under control, and that it is a good thing that it is localized and hasn't spread...
(Spanish/Español) Karina: Esclerodermia Localizada Morfea/Madre de Paciente Finalmente hace unos días me dieron el resultado, estoy un poco asustada, es la primera vez que escuché tal palabra...
Tata: Morphea The skin from my ankle all the way up to my knee was completely fused to my bone...
(Español) Tata: Morfea Hace unos 4 años comenzo a extenderse en la pierna y fueron apareciendo otras manchas en mi brazo derecho, espalda, en mi cintura y desde el tobillo hasta la rodilla tenia pegada totalmente la piel al hueso...
(Update) Kaycee: Diffuse Scleroderma, Polymyositis, Fibromyalgia, and Diabetes I battle flare-ups on what is almost a monthly basis, but it is my faith that keeps me going in spite of it all...
Tori: Localized Juvenile Scleroderma This is not the first rare disease that I have had...
Olga: Difficult Diagnosis Recently I came across www.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...
(Update) Sharon: Limited Scleroderma, CREST, Sjögren's and Pulmonary Hypertension I consider myself very lucky, as over the years since diagnosis things have not progressed as fast as I was told they would...
Brandi K: Interstitial Cystitis I am at the end of the road and can not find a doctor that can help me...
(Update) Amy B: Limited Scleroderma with CREST It has been a little over three years since my original diagnosis and I am doing okay...
(Update) Sue Ann: Mother of a Son with Scleredema The thickness of his face has improved some. He is planning on getting married in the summer of 2007...
Elaine GH: Limited Systemic Sclerosis I tell everyone I meet about scleroderma. I have joined two support groups and bought all three editions of Voices of Scleroderma...
New Personal Stories
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...
Jessica G: Parry-Romberg Syndrome By the time I was about five years old, the disease had already disfigured my left side drastically. I have had over fifty operations and surgical procedures for Romberg's....
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...
More New Stories: Feb-August 2008
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