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Which advice would you give to someone who has just been diagnosed with Fibrous Dysplasia?
See some advice from people with experience in Fibrous Dysplasia to people who have just been diagnosed with Fibrous Dysplasia
Read all you can and ask as many questions as you can think of.
Posted Jun 9, 2017 by Lisa Hill 2050
Learn as much as you can about FD..many Doctors do not know about this bone disease...seek out info and Dr from NIH.
Posted Jul 21, 2017 by Debra 2000
Not much was known back when I was told so I had no idea until it started growing again after 33 years. Join these closed FD groups and dialog among yourselves. Be your own advocate! Don't let a physician do an unnecessary surgery just because he wants to play with something rare, only if you truly need it! For surgery causes it to grow!
Posted Sep 9, 2017 by Debby 1200
My best advised will be to make sure they don't hurt the area on their body that is infected by the fibrous dysplasia.
Posted Oct 7, 2017 by Kiesha brown 3050
It is okay to be frustrated, to be angry, to be in pain (I actually am close with pain right now), and of course, to cry. But it had given to us for a reason. FD made me stronger, made me better, and still helps me to see the world in the bigger picture. You can inspire people by living proudly with FD. It's really up to you if you will let FD define you or if you will redefine your FD in your own way. If I can inspire people despite having FD, then surely anyone can.
Posted Oct 23, 2020 by anna_d09 2500
I still don’t have much help or Info from Doctors, but find groups that may understand you. You’re not crazy, you know when something is wrong with your body.
Posted Jan 17, 2021 by Emmy 2250
