I met with Dr Alexandra Villa Forte at Cleveland Clinic yesterday for a check-up and rtx infusion. The infusion and check-up went well, but, as we talked, she asked me what she could do to be a better doctor for me (and fellow weggies). My immediate response was that I’m not the best person to ask. (I’m pretty low maintenance at this stage of my GPA journey and have been in a sustained remission for over seven years.) I think she deserves a fuller answer.

A little background: She carries nearly a full patient load (full load is 60 appointments per week – I think). She is involved in research and helps the Vasculitis Foundation screen research proposals. Joyce Kulman (Executive Director of the Vasculitis Foundation) calls her frequently to ask questions and get good answers. Joyce would also like to have her on the Board, but Dr Alex is still thinking about how she would fit that in.

As I thought about her question on the way home yesterday (traffic on I-71 wasn’t too crazy until I got back to Columbus), I think you folks on this Forum can be a great help. So, think about your experience with GPA. What do you wish you had known then (at disease onset and following) that you know now? How did you gain that knowledge? What do you wish your GPA doc had done differently, more of, less of?

Please post your thoughts here between now and October 1. I’ll summarize them and forward them to Dr Villa Forte.

One idea I’m going to pass on to her is to log on to this Forum and read through the threads that pique her interest. Some of the experiences you’ve shared here would be pretty enlightening to a good doctor.

Thanks for your ideas!!