Quote:
Originally Posted by kellym
I am slowly get used to it, it amazing the things you get used to over time, my daughter is coping very well if you didn't know you'd think nothing was wrong with her, apart from pesky cough that won't go away!
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Honestly, as someone who had AA and ATG as a 5 year old, let me tell you, it was way worse on my parents than it was on me! I didn't really understand what was going on, but things were new and I kept getting presents and lots of yummy applesauce (my mom figured out she could crush my pills into it and I wouldn't care!). Frankly, my only last effects from it was a superpower for needles!
I see you're in the UK - it might be an idea to see if your haematologist can send her BMB results down to Prof Marsh at Kings College Hospital in London for a second set of eyes on it. She's the UK's leading specialist and researcher in AA and she is WONDERFUL. She's also very interested in childhood AA and the longevity of ATG remission in patients, too.
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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!)