I just got off the phone with our local Genzyme rep, really great guy. He is a clinician who works with Genzyme patients and the hospitals, sort of our liaison.
He wanted to give me a heads up because he thinks Hannah may be being switched from Dr. G. in genetics to Dr. E., since Dr. E. is a world reknown expert in lysosomal storage diseases (in which Gaucher’s is one). He also wanted me to call Dr. E’s clinic assistant because they have some questions before the first infusion. He can’t say for sure, but that is what seems to be happening.
I’m not going to complain…but I would love to know what happened behind the scenes to make this change!
She is such a beautiful baby. I pray they find a cure for her illness. I will grab her button. God works is mysterious ways. Getting word out may help many with the many genetic conditions.
Chronic Chick