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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  • dawney

    confused and scared.

    Hi my name is Dawn and im desperate for advice.  8 weeks ago i was told i tested positive for anti bodies in my blood as follows:-ANA 1.28  centromere ANA positive. Note showing :- ANA Centromere staining pattern is assicated with the CREST varient of systemic sclerosis.the consultant rang me the day after the test and told me the result, he said i would have to be checked yearly for heart and...
  • aimtiaz


    Hi everyone. my name is Aisha and I’ve been dealing with CREST syndrome for about 10 years now. Because of this I have raynauds, scleroderma, esphogus and broken blood vessels. A little hope is what I’m looking for I’ve gotten so bad I’m in consideration for lung transplant. Winters are hard for me so if anyone would want to talk or give me some tips on what you guys do during these hard...
  • Katie_Gilespie


    I am a 21 years old, got I was told over 2 years ago or so I had scleroderma and it was super low back then and the pass few months its been getting worst, I'm scared, I felt like no one knows what I'm going tho. But today i notice my lips been looking wired and sore, i dont know if it has something to do with selceroderma! Few more things thats been going down hill for me. I just need confidence...
  • Kimmy_g

    20 yr old Scleroderma/Raynauds

    Aspiring to Inspire. I'm hoping I can make friends and learn new ways to live a better life with scleroderma and Raynauds. I was diagnosed at 8 years old and have lived a relatively normal life. Recently the disease has become worse and life has been hard but I'm still going strong and positive. 
  • dani17

    Looking for someone to talk to

    Hello I was looking for someone that can relate to me....I was diagnosed with systemic scleroderma at the age of two and I just started 12th grade it's been really hard for me at school, people make fun of me and point and laugh when they see me so I'm looking for someone to talk to
  • tiarra88

    29 yr old dignosed with scleroderma

    Hello everyone i have been newly dignosed with this rare diease. I'm kindly taking it hard at this point and time. I went from being fully active fine to barely getting out of bed and barely dressing myself within a 4 month period!!!! I've accepted i have this but my question is will i stay like this as in for being weak not being able to lift myself off furniture that is low or stooping down to...
  • scleronelly

    41 years old, do with scleroderma

    Hi everyone! I am hoping that coming to this site and speaking with others who are dealing with Scleroderma. I am newly diagnosed. Had the Avise test done and I have zero overlaps. Just scleroderma. This Wednesday (2 days) I have my second rheumotolgy appointment to discuss the results of the Avise and what she wants to do moving forward. I am so confused with this dx. I do not have the obvious...
  • dbrunson


    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.
  • SydneyAH


    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...
  • HippieHousewife

    Will my clothes ever fit again?

    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...
  • Rjean

    Early symptoms before diagnosis.....

    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

    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...
  • Rjean

    Where to start?

    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

    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

    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...