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Hi Jenni-fleur.
It's always so nice to see other patients in the UK! My story is a similar one to yours - I had AA as a child and then recently developed hypo-MDS as an adult, but I was very fortunate to have a matched unrelated donor and have since had a (very nearly) full recovery from my bone marrow transplant last summer.
I second the advice given here to get your doctor to refer you to Prof Mufti at Kings. Besides being one of the world's leading experts on MDS (and his colleague, Prof Marsh, who is also at Kings, is an expert on AA), he is a truly lovely man who will give you hope and make you smile again and just want to give him big bear hugs. You really mustn't give up hope - keep fighting, and get the experts to steer you towards the best treatment options.
melissa
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding!  I've run 5 marathons now!! (PB 3:30!)
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