Is this the right place to be discussing this disorder? Do you have a message board where you can read other people’s posts who might have this disorder. We don’t have a definitve diagnosis but it looks like this is what my friend has.
Beanbrain,
I hope that’s not indicative of physical attributes!
Yes this is one place for discussion, but as a group site with some of the really rare diseases it is just getting started.
My interest is retroperitoneal fibrosis (Ormonds Disease)
Drop me a note with basics; sex, age, where (both geographically -where in the world, or country- AND where in the body, Doctor specialties, how was diagnosis made, what is treatment, what are symptoms & for how long, & anything else that you think would be beneficial and I’ll run it up a 400+ member flagpole and see what pops out.
Pmorgan7@sbcglobal.net
By the way my wife has RF and has been through the wringer and I’ve read exerything that I can find and joined every support group that I can find as well. There are a few just for RF.
Put
Connecticut, USA
Drop me a note with basics; sex, age, where (both geographically -where in the world, or country- AND where in the body, Doctor specialties, how was diagnosis made, what is treatment, what are symptoms & for how long, & anything else that you think would be beneficial and I’ll run it up a 400+ member flagpole and see what pops out.
Pmorgan7@sbcglobal.net
By the way my wife has RF and has been through the wringer and I’ve read exerything that I can find and joined every support group that I can find as well. There are a few just for RF.
Put
Connecticut, USA