Thread: How to cope
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Old Fri Dec 19, 2014, 10:40 PM
Jeagles13 Jeagles13 is offline
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Join Date: Dec 2014
Location: Australia
Posts: 1
How to cope

Hello all,

I'm new to this website and I'm so glad I've found it! I'm writing on behalf of my brother who was diagnosed with AA when he was 4 and PNH when he was 19 (Now 26 years old). He is currently not eligible to receive Soliris as he is not haemolysing (you must be haemolysing to be eligible for Soliris in Australia). He never speaks about his condition which I think has made it very difficult for him to cope. Do you have any advice on how I could support him? I don't want his anxiety to ruin his last years. His prognosis is not very good as he has chronically low platelets, is neutropenic, has clots in his liver which has now caused early stage liver disease and is no longer able to have a BMT or LT. Any advice would be appreciated. Thank you so much for reading. I wish you all good health and happiness.

Jenny
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