Anyone out there in WI or IL?
 

I just found out I have PNH and I am so unsure of what the next steps are. I am being told I don't need any treatments by one Dr but I am going to see another one in another week. I am unsure if I should go to Chicago for a specialist or northern WI. Any ideas?:confused:

I think that getting additional opinions is a good idea, so you are on the right track.

According to the PNH Support Group website, Drs. Andrew Artz, Joseph Baron, and Christopher Daugherty at the University of Chicago have experience treating PNH. I suggest contacting them.

You are about the same distance from the University of Wisconsin and the Medical College of Wisconsni as you are from Chicago. You could contact those centers as well to ask if they have PNH specialists on staff. For a rare disease like PNH it's important to find physicians who understand and have treated the disease.