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Cayla Butcher

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  1. Thanks again guys. I am just worried because they said there was no reversing it, and due to the severity she is likely to live for only a year or two. I hope they are wrong; it came on so suddenly we hadn't even really heard much about it until about a month ago. I messaged Robyn Sim about a good sclero specialist in the Melbourne region; I'm a little impatient though , if anyone knows of any please pass it on. Thanks.
  2. My mum has pulmonary hypertension due to scleroderma; the doctors have said it's quite severe. Does anyone know of anything that can be done?
  3. Thanks Judy, I will be sure to message Robyn, thanks so much :)
  4. Thank you so much everyone. I am in the Geelong area. I don't mind traveling too far, any suggested sclero experts? Thanks again, will keep updating!
  5. Hi, 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?
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