Scleroderma Support Group

Hi everyone, I was on this site looking for a group for bereavement because my mom passed away last month, and then I found this Scleroderma group too. I was diagnosed with Sclero. in January 2007. I'm 36 years old from Michigan. I've had trouble swallowing and acid reflux since 1994, had surgery for it in 1998. I also have Raynauds. And in the past 2 months my hands are swollen and there's less movement in them. So that's me, I'm looking forward to learning about you all.

I do not know if I have scleroderma. I have Raynauds, positive ANA, positive Rheumatoid factor, and have been diagnosed with Rheumatoid arthritis/Lupus which the doctor is calling mixed connective tissue disease. My father had scleroderma for the the last 15 years of his life. He did not know what it was for a while until they took a skin biopsy. I do not know if it was diffuse or what. He did have the calcium deposits in his skin. It is an ugly disease. Right now my rheumy is treating the arthritis with Remicade and methotrexate. It is working. But I also have GERD that is worse at times and then gets better. When I look at my ANA titers it is always in the section that mentions scleroderma. I wouldn't be surprised if I have it. The doctors are watching it closely. My dad did not really get a whole lot of treatment. He was afraid to use methotrexate and they did not have remicade. He was mostly on vicodin. His did not really progress too much. He became wheelchair bound, though. I am bound and determined not to end up like that. Not really sure I belong here, but I have been around the disease.

It's definitely nice to know that we're not alone. I was diagnosed with Lupus, first, then Systemic Scleroderma. The specialist I went to said that this disease is a waiting game, really. Nothing to do but treat the symptoms. I got so depressed I tried to commit suicide. I didn't want to know that I was going to wait around and get worse. It was a horrible time for me. Now, over a year later, things are defintely better. The last specialist I saw gave me more hope and told me that if I could get through the next few years without any major symptoms, I just might level off. Which means I won't get better, but I won't get worse. This sounds a lot better to me than waiting around for it to get worse. Just remember to be proactive in your treatment and don't listen to the first doctor, or even the second or third one, if you are not getting all your questions answered. This is a rare disease and a lot of so called "specialists" don't know what to expect. I am just grateful to be alive today and to be functioning. Even walking in pain, it's a good day to be alive!

were in pa are you. i am in new jersey just over the pa border.

were in pa are you. i am in new jersey just over the pa border.

hello everyone I have been diagnosed with scleroderma since August of 2008 but I got sick in 2006. I am a 28 year old female and never had any health problems growing up. I don't have the typical symptoms of scleroderma, such as thickening of the skin. I have all internal symptoms. Scleroderma caused me to develop end stage interstial pulmonary fibrosis and now I need a double lung transplant. I also have raynauds and rheumatoid arthritis. I have had difficulty with swallowing and have severe acid reflux. Does anyone elses scleroderma effect their internal organs?

Summerbell,

It sounds like you have scleroderma sine scleroderma. That means scleroderma without skin hardening. I may ultimately be classified with that. They have scheduled me for an echocardiogram and pulmonary function test on Dec. 3. Like you, I have no skin hardening. I think my Dad had this too, and he never did get skin hardening either. His mother, in her 80's had the radial furrows around the mouth that sometimes go with CREST.