I was actually searching for the very links that you provided above. I wanted to show them in my response to this thread, but the system wouldn't let me post them. That's why I had to resort to describing an image search that would reveal the new diagnostic point charts.

It used to be, unfortunately, that sine patients could only be diagnosed upon autopsy, when the massive hardening of organs made the diagnosis unavoidablly obvious. And because we " look so good" we still don't get treatment other than, "take a baby aspirin daily," " sleep with the head of the bed elevated to prevent reflux," "keep your blood lipids down with pravastatin," "keep warm," "take levothyroxin," " use artificial tears frequently," "treat the recurrent uveitis with steroid drops when it recurs," " take physical therapy for the frozen shoulders," and come in every couple years for an echocardiogram and PFT to monitor the pulmonary hypertension and lungs." I really don't call those things treatment.

Meanwhile the internal organ damages still occur, because we "look too good" to give any immunosuppressants to us. And we "look too good" to enroll us in special research studies on sine scleroderma.

It's frustrating, but I guess I should count my blessings that my skin thickening is still limited to puffy fingers, even though there is a lot going on inside.