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Hi Julie,
Good luck with the move, but you know that a lot of Victorians retire in Queensland so you might come back one day.
As for the Lupus, you would hope that they tested you for it, but they hadn't in my brothers case. Although, it didn't make any difference to his treatment. Same problem, same treatment, different name.
I was recently asked by my insurance company what was the name of the disease I have. Well, I haven't been given a name for sure so that posed a bit of a problem. I just had to say 2 cell cytopenia with transfusion dependence. My haematologist said that he was reluctant to label me as having MDS (although bone marrow looks like MDS 5q del without the chromosome abnormality) because it would be rated Intermediate and would effect all kinds of things, like insurance and treatment possibilities. I just keep telling myself it doesn't matter but it would be nice to have a definitive diagnosis.
Hope you enjoy next winter BRRRRR
Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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