|
Thank you Shelby, this is very enlightening!
I was wondering about travels, and that is good to know.
Does your son have classic PNH?
I am bummed to hear of the stomach pains still occurring as that gets very debilitating at times. Did it lessen. My dr. says most of that should go away...
Also, did they say once you are on it, you can't come off of it...I ask my Dr's asst but have not heard back as to whether that would create complications.
thanks so much again for your time, this info is invaluable!!!!
|