Does anyone know how I can find a doctor who specializes in Fibrous Dysplasia of the Skull. There are no doctors in my area who even know what it is. I really need to consult with one who can tell me what I need to do. I live in Kansas City Mo, but am willing to travel. I would like to be able to have a phone confrence with someone before I chose to travel. If I even need to. This has been such a frustrating situation. I am an adult with this. I do know this disease is more common in children, but I am 29 and have this.
Any help would be greatly appreciated. Thanks!!!

Natalie,
I know that the travel is an issue, but I only know a couple doctors in the SE. I use to see one in Knoxville at UT (a friend who has FD of the skull still sees him) and then the doctors at NIH in Bethesda MD. A long drive, but was definately worth it for me. I participated in a clinical trial there for FD. There is also the Limb Preservation Clinic in Colorado too, but way to far for me to travel.
I am now considering an ortho onc in Atlanta - so the drive won't be so long. If I get in with him, I'll post and see what you might need to do.
Hope this helps,
hrtofluv

There are a couple in St.Louis. I believe they are at Barnes Jewish hospital. You can find there contact info on the net.
Let me know if you cant find them.
Anne

Hi. gl on finiding one. Best Luck

Bumping up for Clair to read.

*This is actually Pam, Amy is my sister my computer is messed up so I am using hers.*

Hi my name is Pam. I was diagonsed with firous dysplasia when i was 7. I am 33 now and the tumors have recentley come back. I'm in a wheelchair and suffer with constant pain.There is hope.I recieved wonderfull info from the paget foundation in NY,NY.They reffered me to aspecialist in my area. I live in AnnArbor Mi.Most drs don't know anything about it,especiallythe fact that it is chronic and can cause many other serios illnesses of which i suffer from a few.The Paget foundations number is 1-800-23-paget.Hopefully they can point you in the right direction.Hopefully that helps if not contact me maybe I can give you some other leads.Just make sure who ever it is ,is familiar with it there is a lot of new research being done so don't waste your time with a dr who is really not sure.Best of luck!