Connecting with others with Retroperitoneal Fibrosis

Hello, my name is Carol Gortler and I was diagnosed 4 days ago with RPF. I am looking for people with the disease to correspond with.

Hi Carol
My name is Sharon and I am 58yrs old and diagnosed in January of this year after 2 yrs of severe pain and being told its in my head. The Dr’s at the hospital have just started me on steroids after being rushed to hospital and being kept in for 6 days, I also have abdominal anerisym 3.8 cm which needs to be checked regularly and as you know both ate life threatening oh joy.
Would love to chat with you soon xx