The worst thing that could happen has happened: several patients have had their therapy taken away. The justifications for this refer to the reclassification of the variant p.D313Y by the laboratories. They are scientifically incorrect, the state of research and the successfully treated patients were ignored. How much pressure was put on the physicians is unclear, but ultimately they chose to deprive the patients of their livelihood.
We know many of the currently affected patients personally. We were allowed to witness how they got better with the therapy. They were no longer confined to bed 24/7 or could even put away their wheelchair.
We hope that we can still somehow prevent the progress from becoming regression again. We know that the pain cannot be managed with common painkillers.
Therefore, here again the very simple explanation: The therapy is only effective against Fabry, there are no known accidental effects on other diseases.
This alone should be reason for the “specialists” to question their refusal or better still to give up their resistance and to treat the patients and finally allow the diagnosis of further patients again.