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.

223 Members
234 Posts
0 Online
Skin & Hair
/ Scleroderma Support Group

Scleroderma

Katie_Gilespie
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 from someone who is going tho the same thing as me, I'm sorry its not the same when someone doesnt know how i feel. 

Riana
Riana
Hi there .. Im am with Raynauds and Limited Scleroderma for 18 years plus now .. Slight symptoms of it .. Nothing serious yet and on meds .. Have you been to a rheumatologist .. Depends on which kind of Scleroderma you have been diagnosed with .. Symptoms of people varies .. Visit your gp or rheumi for your symptoms .. I hope you feeling ok today .. Greetings from South Africa
Riana
Riana
Sorry .. Im am on no meds for my Scleroderma yet .. Only Vitamin D .. My vit D levels are low .. Raynauds in my hands flares up on and off .. Otherwise .. Im doing well .. By the grace of the LORD .. Bless you
Boobum
Boobum
Hi Katie, as I just recently found out after having scleroderma for 30 years now. you are not alone, there are many more of us out there. I have never meet anyone else that had scleroderma until a couple of weeks ago. Scleroderma is so different from person to person, so what I am going through you might not get any of it. See, it hasn't touched my face but I have ulcers on my fingers and I have internal organ issues. If I could give you any advice it would be to read up on it, but try and keep it in perspective. I got very depressed when I started my own research, but it also pushed me to get all the testing's done that I I can (which is a lot), just in the past 2 months I have 2 new rheumatoligist's and a GI doctor, trying new meds and medical procedures, I was able to get into a scleroderma clinic and I joined a support group. My calendar is full just in doctors tests and appointments. I have one ulcer on my index finger that has been there for almost a year now but that finger has always been bad. I have requested that it be amputated. My case is mild compared to many people. You have every right to be frightened, but you have friends who know exactly what you are going through. Please feel free to reach out anytime. Thoughts and prayers go out to you from Toronto, Canada.
Miara
Miara
Hi there. Thank you for sharing .You arent alone. Im currently in hospital just found out yesterday. I come to hospital with other symptoms . I dont know the severity as yet they said i need to scan my heart and lungs. I have scleroderma as well. Im on oxygen. Im hanging on .i know its hard. Be strong people.