hi megan. i believe you were one of the speakers at the cares conference last year??? on the panel???? if this is the same megan, i enjoyed your comments last year and thought you were great!!

a question if you don’t mind: why do you and your sister feel like you are in pain everyday?? i have never heard that description of life with cah. i am a parent of a 1 year old with swcah. also-the extreme fatigue and "tree trunk" leg feelings-is that often for you?? i would assume that was just if getting an illness (viral, etc) or rarely if being undertreated. thanks in advance!

louise