Hi Everyone!

I am new to this group, but not new to Ben's Friends. I am in the Von Willebrands group. I have also connected with "Ben" on twitter as a rare disease advocate.

Eagles Syndrome is a new diagnosis for me. I have asked a few of my Dr's about it and they either don't know, or know, but don't know who could help me locally. I am near the Chicago, Madison, Rockford area. Anyone have an oral surgeaon near this area that has helped them? I mostly want their input.

I have another few rare conditions in this area of the body, the main one being Klippel-Feil Syndrome. Its been a long journey!

Nice to meet you all! I am reading past posts and trying to understand the next steps.