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Old Thu Sep 23, 2010, 09:51 PM
Chirley Chirley is offline
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100

In march my doc told me I had a MEAN life expectancy of 3 and a half years, it has now been reduced to 18 months. He went to great lengths to make sure I was aware that MEAN included people who lived a very short time and others who lived for years depending on a lot of other factors such as age and co morbidities. He also stressed that these time lines were for people who didn't receive treatment.

All in all the defence mechanism within me wouldn't allow me to accept that time frame in any case. We all think/know that those statisics don't apply to us....they belong to other people.


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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