1: Mon Jul 14, 2008 9:21am iro
My 9 year old daughter was recently diagnosed with a brainstem cavernoma (the neurosurgeon says it's not operable), she had one bleed which has left her with double vision (which is improving) and a slight head tremor.
I am concerned that my other children should be tested and I've heard that there is a genetic test that can be done. Does anyone have any information on what the test is called, entails and where it is available. I live in Ireland.
Best wishes to you all,
2: Mon Jul 14, 2008 11:00am tonymcenery
I would ask on the US forum if I were you. I have never been offered the test of had it discussed at a consultation in the UK. Good luck with your daughter. best,
3: Sat Jul 19, 2008 6:06pm ianstu
Now Tony. When did the NHS go out of its way to offer anything that you didn't ask for? Genetic testing is alive and well in the UK. The doctor, who receives your blood sample, spoke at our first International Conference. Contact your GP or neuroloigist and ask her/him for a referral to the genetic tester in your area. If no one seems to know anything, then write and ask Dr. Jonathan Berg, firstname.lastname@example.org
4: Thu Jul 31, 2008 4:39pm tonymcenery
Doh! Yep - you are 100% right!
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