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Thank you
Hi Ruth
Thank you so much for all the information. We had begun to do some research and based on that had come up with some of the questions, but the additional information certainly helps us heaps.
We have just heard that they will begin the treatment soon as an inpatient. With the time difference it's hard to telephone the doctor but she will be emailing me and I will follow up with a phone call. She's quite nice and willing to talk to us, so that's a good sign.
It's wonderful to hear that people continue to live 'normal' lives after diagnosis and that there are people so willing to give information on something most of us have never heard of before.
I will keep the forum posted!
Best,
Lianne
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