❤❤❤

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.

Do you have "Café-Au-Lait Spots" ? At what age FD was identified?

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 . )

I believen you Lauren don't let anyone say your not like others I'm here for youhope you feel better 🙂♥️🙏🤞🙂♥️🙏

USMLE has this syndrome now. I just came from my preparation

👍👍👍👍👍🙏

I have the save name as you

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.

Madhya shaadi karogi shaadi karogi all

Love you

Let all pray for her healing.

I love ypur beautifulpainted toes.Pleaswe email me aty:[email protected] Yhank you

We love you and God bless you ❤️❤️❤️

God bless you ❤️❤️❤️

Tu es belle ma chérie

Lauren, thank you for opening up, & sharing your story with us! I will pray for you too!! 🙏✝️🙏

This is awesome! Let’s get a group together and do a video series 🔥🔥🔥

Your beautiful and God bless you

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

I have this disease in my left cheek I’m 17 years old I’ve had it my entire life I don’t know what to do anymore I get bullied too much

Hi

I can totally relate. Hang in there FD Warrior. Are you a member of the Fibrous Dysplasia group on Facebook?

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