Alice, without doubt, is one of the bravest pioneering patients of the global Ssc community, and whose story personalizes how devastating and aggressive this diagnosis can be, but how it can be overcome. Alice underwent a double lung transplant in 2012, and has been taking part in marathons since 2014. Warning: prepare to be in awe of Alice:
This illness affects the skin, as well as the heart, lungs, gastrointestinal tract, kidneys and muscles. It causes calcinosis, vascular symptoms and circulation problems such as Raynauds phenomenon.
In my personal case, it affects my skin tissues, joints, esophagus (with reflux) and my lungs with a lung disease called fibrosing type NSIP. I also had: positive antinuclear antibodies, positive SCL antibodies, positive anticardiolipin antibodies, and positive antiphospholipid antibodies.
Today I will focus specifically about my lungs. Like I said before, scleroderma seriously affected my lungs and because of that, I was taking six doses of Cyclophosphamide between November 2002 and April 2003. After April 2003 I took Aziaztriopine until May 2007.”
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