My son's name is Adam and we live in Canada. He is going to be 33 next month and has been taking Deflazacort for over 25 yrs now. Just recently, we were told that they are unable to get the drug…Continue
I am a mother who had a son that has Duchenne MD. His name is Adam and he will be 33 next month. We live in Canada.
About my family:
My son was on a study for Deflazacort in Toronto, Ontario at Bloorview McMillian. Dr Biggar was the doctor at the time. It just so happens that he was actually on the Deflazacort and not the placebo. When the study was over, he continued on it till now when we were told that it was no longer available and he is now on Prednisone which we are not happy about. He does not do well on Prednisone as we tried 2 different times. We then put him back on Deflazacort even thu we had to pay for it. We are really upset about this. Any suggestions?
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
You need to be a member of PPMD Community to add comments!