My mum was diagnosed with scleroderma when she was about 30, she is now 50, since she has suffered swelling and red spots on her hands, arms, face, Raynaud's and severe leg ulcers -- so severe that she had her left leg amputated about a year ago, and just recently while in hospital she developed a life threatening infection in this wound.
When she was first diagnosed with scleroderma she was told it was limited sleroderma, but since this infection her doctors are saying she has both. She has had trouble with her kidneys, heart and lungs, but before she got the infection her breathing was never that bad but now they are saying she has pulmonary hypertension and will be on oxygen forever. They have also said that she has roughly 12-24 months, and that is if infection stays away.
She has never seen a scleroderma specialist, only doctor after doctor. Is there anything else we should or could be doing? Does anyone know survival stats, or anything?