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Hi Deb,
These diseases can be frustrating can't they? The "treatment" can be slow and unpredictible, even more frustrating.
I have no answers for you except, hang in there.
Best of luck to you.
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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