My 2008 Vasculitis Symposium Experience

By Suzanne DePaolis aka Karen

Ok, anyone that knows me realizes that I am incapable of writing that way. Iwould rather tell you how it felt to be at the conference. How it made a difference in my life and the way I will deal in the future with my illness;

How a simple thing like a conference has empowered me to go out there and not just live life but to BE ALIVE!

I hope you are not expecting your traditional 417 people attended the biannual Vasculitis symposium held at the Mayo Clinic in Rochester, Minnesota on June 6th -8th. Many famous faces from the world of vasculitis practice and research were there sharing  information and giving timely advice. Everyone enjoyed the diverse topics that ranged from Yoga to Modern Treatment Protocols. The Saturday evening banquet was a success with much discussion between new found friends.

Some of us got good news at the conference (oh, good it’s just a side effect of a med), some of us got bad news (the numbness means some nerves are gone and probably won’t come back). Overall the importance of a conference like this is that we got information and this information camefrom the Top Doctors in the United States on vasculitis. We got to meetthem, hear them talk, touch them (Oh god! I am sounding like a stalker…) and they listened to us. Truly listened and answered our questions. They did not have one hand on the doorknob ready to exit the room; they stayed for every question and anything they could not answer came with promises of sending it to a doctor that could answer.

We are coming home feeling empowered and less alone with our illnesses.We have seen others with moon faces, budda bellies, odd noses and thinning hair. We sat and ate with people who also finished everything on their plates due to being on prednisone I wrote the first night in my journal how everything seemed right in the world, how I didn’t feel so lonely in my illness anymore and that is still true. I have made friendships that I expect to last a lifetime. I now can hear their voices and see their faces as we exchange emails. And when things get really bad or I am just having one of those truly awful Vasculitis days…. I know now… “Who YA gonna call?”

My Vasculitis Buster friends!