Finally had the appointment with the geneticist which really didn't tell me anything new so what was the point of it?
Apparently they don't do a genetic test for it but was happy to discuss what would happen if me and a future partner decided to have kids etc in terms of prenatal testing for NF and the options of termination if it came back positive. Well I'll book us both an appointment with the GP but I don't think either of us have quite the right anatomy for giving birth (both of us being male).
Still he is sure it is NF 1 rather than NF 2 so that was the good news etc and went over some of the problems associated with it. Most of which I know about as I've been reading up on it ever since I was first told about it. Still it's a case of just keeping an eye on it having my blood pressure checked anually etc.
He also ended my measuring my head as apparently sufferers from NF sometimes have a larger skull than normal - at last a reason why I have problems finding hats, caps etc that fit.
Saturday, 20 June 2009
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