It is so frustrating that most hematologists are not aware of genotype testing. They keep assuming that when patients request genotype testing for the purpose of crossmatching blood, that they are in fact looking for genetic mutations. These centers have got to update themselves so that they are offering patients the latest treatments. Patients are not going to benefit from all of the strides that medical research has brought if the doctors are not educating themselves and if the latest treatments are not being offered to patients.
Once again, this places additional burden on parents and patients to learn what is going on and then to convince their reluctant doctors. Very difficult and frustrating for parents indeed.
Sharmin