One of the girls I used to teach with mother had it. If I'm not mistaken, Johns Hopkins has a very good program that is researching it.....If that's not accurate, let me know and I'll call Linda and find out where her Mom went.
Well, if it does turn out to be scleroderma, it would answer many questions that we have had over the years, and may be the hidden smoking gun for a lot of Joe's problems.
Scleroderma can be a cause of Pulmonary Hypertension. Everyone thought his PH was secondary to his heart problems, except for his original PH specialist who tested him every way possible and could find nothing (heart-wise) that would cause PH, since his valves were operating well. So if he has scleroderma, then it could be secondary to that, not the heart.
He has some kind of "kidney failure flares" where out of the blue, his kidneys stop working efficiently and his CHF becomes hard to control. We have no idea what is causing this. He is so tightly controlled with meds and diet. But scelroderma can cause this kind of flare-up.
His progressing lung fibrosis is a total unknown, but scleroderma can cause that.
And then there is his very hard skin and underlying muscle on his lower legs and feet and toes. Many doctors said this was from fluid retention, but it is like a rock--I doubt that fluid would cause that. And when his fluid is mostly gone, the hardness is still there.
He also has hepatosplenomegaly, and scleroderma can cause that. No one has been able to adequately explain what causes this other than ascites. But the enlargement can be pretty pronounced and even painful.
And he has oval lesions on his legs, and everyone thought it was a fungus problem or caused by inadequte bloodflow, but scelroderma can cause that too.
And he does have small red spots and purpura on his skin, and scleroderma can cause that.
It's definitely something that is of a systemic nature and I'm hoping that they will find the culprit that ties them all together.
We'll have to wait and see. Joe is a "work in progress"
I have systemic scleroderma as well as a bicuspid aortic valve (surgery scheduled for 4/10). I don't think they're related because the valve problem is congenital but the scleroderma (with lung fibrosis) makes the surgery riskier than normal.