Scleroderma Support Group

Scleroderma is a rare, chronic disease characterized by excessive deposits of collagen. Scleroderma affects the skin, and in more serious cases it can affect the blood vessels and internal organs. The most evident symptom is the hardening of the skin and associated scarring.

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  • HippieHousewife

    Will my clothes ever fit again?

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    In the summer of 2015, I had lost about 7 pounds and at the moment, am having a hard time gaining it back. Because scleroderma has affcted my stomach, I cannot eat like I used to so I am eating more but smaller meals throughout the day. I am working out sporadically doing different things and having some difficulties with that as well. I like to think if I get consistent with it, I will be able...
  • SydneyAH

    questions

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    Hello,I am 19 years old and the doctor just told me I tested positive for schleroderma this past Monday. I have no idea what to expect and I am really scared. I am hoping to live a normal life, I am only a sophomore in college and have so much I want to do. I could really use some answers, advice, and encouraging worlds as this has already taken a huge toll on my mental outlook. I want to have a...
  • hopefulholly

    My dad just diagnosed...

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    I am 31 and my dad is 68. He had a stem cell transplant to cure acute leukemia 4 years ago and just diagnosed with schlerdoma. I have read horror stories and am scared. His body has already been through hell. He also had cancer when I was little too. Can schlerdoma be managed or does it always end badly?
  • Rjean

    Early symptoms before diagnosis.....

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    Hi, I have been studying a lot about Limisted Scleroderma since I was diagnosed and now know that I am in the very early stages of the disease.  I am wondering when any of you realized or learned your symptoms were connected with scleroderma?  Were any of you diagnosed very early?  If so what were your early symptoms?How long was it before you had Raynaud's symptoms?  What were the ealy...
  • HippieHousewife

    How to feel sexy with Scleroderma

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    It's been bout 4 years I think since I have been diagnosed with diffused scleroderma. I had started experiencing Raynaud's at 18 but wasn't diagnosed till like I said, 4 years ago. When I was diagnosed, I had just gotten my Associates degree and was starting on my bachelor's which is when it all started caving in from the skin sores to my stomach not working properly and my joints swelling. I...
  • dbrunson

    SCLERODERMA

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    Hi if there is any one who has scleroderma and would like to friend me for support please do. I have been having scleroderma for 13 years now. I have pulmonary fibrosis/Gerd/raynards from this disease. I decided to go on disability 4 years ago which was the best decision I've made. I am looking for a support group on this site if any one is willing to do so as well.
  • Rjean

    Where to start?

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    Hi!  I have a lot of questions. I am female and 50 years old, I was diagnosed with limited scleroderma (CREST syndrome) in 2015 after having an ANA test done because I had aches and pains that would move from joint to joint and by the end of the day I could hardly walk because of the pain in my feet.  My nurse practitioner/chiropractor who did the test sent me to a Rheumatologist, he had me...
  • deleted_user

    fever of unknown origin

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    Hello- I am hoping for some feedback about systemic sclerosis.Has anyone known/experienced this disease causing a chronic daily fever? I have had a fever every day for 21 months along with multiple other symtpoms and abnormal test findings but my doctors have still been unable to diagnose me and explain all the abnormalities they find. I have seen numerous specialists, had countless tests, and...
  • bny806

    Needle can't puncture skin easily

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    hello, I have undifferentiated connective tissue dz and some other autoimmune issues.. but i had a question about scleroderma.. i have noticed my skin becoming thicker in various places- arms, chest, back, face (when i open my mouth the corners of my mouth crack and my eyes pull downward- I am in my mid 30's so my skin should start getting looser, but i feel its getting tighter).. and my eyebrows...
  • Gardener21

    Is the inspire scleroderma server totally down?

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    I haven't been able to get any of the inspire scleroderma web pages to load either yesterday or today. Are others experiencing this, too?
  • ricks72

    Search for advice, thanks

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    I am a retired teacher from Marysville, Washington. I am 61 but will be 62 in May of 2016. I have been happily married for 39 years, we have three children, all are healthy and doing well. We also have two grandchildren with another baby girl due in September of 2016. I consider us a normal, well adjusted and happy family. I have an occasional beer but for all intents and purposes, I really dont...
  • natasha1975

    Remission?

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    Anyone achieve remission for long periods of time?
  • natasha1975

    Systemic? Doing ok now?

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    Is it possible to have Systemic Scleroderma with little skin involvement and still do well?
  • gasf

    MRI Drug & Scleroderma

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    Hi all,I posted years ago regarding the link between scleroderma and gadolinium-based contrast agents. Here's a recent article you might want to read. There will be many more articles like these in the coming months. http://www.propublica.org/article/left-in-the-brain-potentially-toxic-residue-from-mri-drugs
  • deleted_user

    3-5 year peak period

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    I am new to the group and have recently been diagnosed with diffuse, systemic scleroderma. I started having symptoms about a year and a half ago in my hands and feet. So far I have no organ involvement. My doctor is giving me hope in saying that the progression is slow and that the disease peaks during the 3 to 5 year period and then starts to regress and get better. Has anyone else had the...