I'm 33 year old and diagnosed with polyostotic fibrous dysplasia / McCune-Albright syndrome. Right now it's so hard to deal with my condition because I had 2 surgeries for my spine to fix my scoliosis secondary from fibrous dysplasia but my bone never fused from the spinal fusion. Everyday I'm in pain specifically on my spine, from my poor posture, nerve pain, muscle pain. And the other thing for me to accept right now and currently dealing is my face, because my facial bone is now also asymmetry due to my fibrous dysplasia, they have to remove all my upper teeth, and I have no choice right now but to hide behind the mask. I'm still not sure if I should go through the surgery process of fixing my cheek bone due to my history of spine surgery that got worse and never fix.
I will look it up . I have never heard of this before . Thank You for the video and making us aware of it . Sending much healing love to you and your family . 😘 (I feel your pain truly . I have Dermatomyositis . Its another rare disease . )
Hi. I too am a recipient of Gods' exceptional humor. The gift that keeps on giving. I have it everywhere, except my skull, spine, and ribcage(except 2 ribs and yes, broke those at one point as well.) I've broken both femurs (multiple times), both tib/fib, humorous(arm wrestling...that hurt), my left ring finger, left forearm boxing as a kid, right forearm(skateboard + pool) left elbow(twice), right clavicle (3times once bench pressing, once in a fight, and once in a car accident) shoulder blade, and feet. The bench pressing was the freakiest one. The tib/fib left side I was hit by a car while riding my bike when i was 15, flipped me over the car, bent my bike, and snapped my leg between the knee and ankle, my biggest concern at that moment, my new air jordans they were cutting off. What a pretty sight that must have been. haha I was diagnosed at 2yrs after launching off my rocking horse(the kind with the springs), and cracking my hip. There is just no money in this disease for them to do research. I do applaud you for making this video. I wish like hell we had the Internet when I was growing up. It would have been nice to not feel so alone. Keep it up, never know just who might need to see this.
Hi I am a victim of fibrous dysplasia and I have the same symptoms as you for I also have it in my right jawbone and cant get a surgery until I am done growing it is also hard for me to eat and I am very skinny all prayers to you and hope you get better! I just found out about it last year and feel your pain
Ryan I feel your pain. My daughter has the with McCune Albright's. She is now 48. Suffers pain daily. You did not mention pain. How do you Handel you pain? God be with you son
