#664
SCW
Keymaster

I’m so sorry to hear your story.

My onset was different…like being hit with a semi overnight. I have Raynaud’s as well but mine started about six months after I was diagnosed, apparently that’s rather uncommon, Raynaud’s typically come first with this disease I’ve been told. Regarding type, yours could be Sine but I think it might be too early to tell, (however, I’m no doctor) every case is so different. For me, the skin involvement was terrible for the first ~nine months. My entire body was hard and shiny, in fact I traveled for work a lot so I became a CLEAR member at the airport which allowed me to get through security with just my fingerprint…well, I learned that you can actually lose your finger prints from this disease.

Interestingly enough, now, 18 months later, if you didn’t know me before my diagnosis you would probably never guess I have Scleroderma. The evidence is still there (wrinkles, scars, red spots) but my skin is soft now. I was diagnosed with diffuse and the lack of skin involvement and the actual reversal of it is unique…but everything about this disease is unique, that’s why I think it might be too early to tell.

My best advice is: PLEASE know that this is not a death sentence!!! I had a doctor along the way tell me I’d have between 5-10 years…that stuck with me and to this day I want to go back and tell her what an awful thing that was to say to someone just diagnosed. Trust me, I’ll be here in 10 years and there are many, many others before me whom have proven this doctor wrong.

Oh yeah, and, go light on the Google searches, there’s a lot of information out there that isn’t factual.

I hope this site will help you along your journey. Thanks so much for kicking it off!!

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