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Personal Stories: Pregnancy and Scleroderma

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer

These are our personal patient and caregiver stories about pregnancy and systemic sclerosis (scleroderma). (Also see Pregnancy and Scleroderma, Autoimmunity and Pregnancy, What is Scleroderma?, Types of Scleroderma, and Systemic Sclerosis)

Anna: Linear Scleroderma (Poland) I realized that it is not worthwhile to give up, even during the most difficult moments; it is necessary to fight and to believe that it will be better. If I had not believed I would not have been alive now…

Barbs: Systemic Sclerosis, CREST, Raynaud's So from the outset, diagnosis took 20 years…

Buggzy: Autoimmune Hepatitis, Fibromyalgia, Undiagnosed I am really desperate to get some answers or to hear from others in the same boat as me…

Becky H: CREST Scleroderma I am interested in becoming a pen pal with someone so that we can be supportive to each other as changes occur and compare notes…

Cara: Morphea Scleroderma I recently saw a rheumatologist who says it's limited or localized 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…

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)…

Fred: Future Spouse of Scleroderma Patient I met a girl five months ago and immediately fell deeply in love with her…

Gerald: Spouse of Scleroderma Patient She would often comment how she wished they could figure out what was wrong, give her the pill to fix it, and she would feel fine again…

Gertie: Systemic Scleroderma without Skin Involvement or Raynaud's She looked thoughtful for a moment, then quietly asked "Is there hope?"

Gina: Morphea or Linear Scleroderma I really try to put it out of my mind and be thankful that it is not systemic…

Jill: CREST Scleroderma and Sjögren's I could not face being in or visiting a hospital so I discharged myself from his care. I decided that I have lived with it this long so will simply get on with it again…

Kath: Systemic Sclerosis (Scleroderma) Moving to Spain has had a positive effect on my Raynaud's, but has had no effect, so far as I am aware, on my scleroderma…

Kathy R: Localized Scleroderma I was diagnosed with Localized Scleroderma when I was six months pregnant with my son in 1965. It started at the time with blotches on my right arm…

Lee: Undifferentiated Connective Tissue Disease (UCTD) A Sloan-Kettering researcher said our problems were related to HLA-B27 inheritance…

Lisa P: Undifferentiated Connective Tissue Disease (UCTD) I have an appointment with a new rheumatologist on May tenth. Hopefully I will get some answers…

Lorrie: Limited Scleroderma/CREST At first I thought, "Oh my goodness! I am going to die." But my doctor assured me that I could very likely live to be an old woman…

Lynn S: Diffuse Scleroderma and Pulmonary Hypertension No one believed me; I guess because I look healthy. I would always hear, 'You are too young for this!' It is hard for people to understand…

Marina: Diffuse Scleroderma I was sent to a rheumatologist who spent one and a half hours checking me while explaining this rare and incurable autoimmune connective tissue disease in a nut shell…

Naomi: Systemic Sclerosis and Pulmonary Fibrosis My doctor is astonished of my attitude considering I have Raynaud's, my fingers are curling up and I have lost my nails, pulmonary fibrosis…

Nathalie: Lupus/Scleroderma I arrived at the hospital with two black fingers. They had gangrene and I was very worried about having an amputation…

Patricia M: Morphea My breasts looked as if they were on fire…

Robin: Difficult Diagnosis My rheumatologist said I have scleroderma, but just lately she said now she is not sure if it is that or fibromyalgia…

Seema: Progressive Systemic Sclerosis (India) My real woes started in January 2002. I developed severe arthritis. My fingers got swollen and my knee joints became inflamed…

Silezia: Mixed Connective Tissue Disease (South Africa) I believe that if we try to feel positive about our life and the cards we are dealt, then we can manage our disease most effectively…

Sparky: Diffuse Scleroderma My pulmonary disease worsened only slightly over the past year. I now face the decision to take cyclophosphamide…

Sue "SASA": Morphea Scleroderma I am a thirty-eight-year-old woman living in South Australia, where there is a high incidence of morphea…

Takeya: Morphea Scleroderma I thank God that it's not harmful to me or the baby…

Veronica: Sjögren's Syndrome (Italy) I am a 30-year-old woman and I have been suffering for three years from Sjögren's Syndrome with highly positive anti-SSA antibodies…

Related Information

Causes of Scleroderma: Genetics ISN.

Voices of Scleroderma Volume 1 book features an article, "The Case of the Misfortunate Fetus" by Asim Iqbal, MD, Department of Obstetrics and Gynecology, Nishtar Hospital, Multan, Pakistan.

Go to Pregnancy and Autoimmunity
 
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