Fibrous Dysplasia and Me

Me talking about Fibrous Dysplasia, a rare bone disease that I have in my face.

Category:

People & Blogs

Tags:

• fibrous
• dysplasia
• rare
• bone
• disease
• deformity
• face
• cheek
• fibrousdysplasia

[horsepower25]

Hi! I stumbled in on this video after watching one of your videos with the GA crew (that I'm a big fan of) & I just wanted to tell you that I think you're so brave doing this & I'm so glad I got to see this video. I think you're absolutely beautiful & I admire your courage so much. I know nothing about this disease & I don't know if there's a cure for it, but I'll be praying that there is one :) Take care!

[lestatsduchess]

@horsepower25 Ty so much. It means alot to me when I get positive feedback about my FD videos. I mainly do them because when I found out I had it, there was NOTHING for me to watch or look at for information and my goal is to make sure someone else doesn't have to go through that. I truly appreciate your words and ty so much for the prayers as well!! All my love to you and yours!

[heathersofia]

You stay strong girl!!! Real beauty radiates from what is inside of us. We just found out that our 12 yr old daughter has FD in Aug. 09. She has it in the right femur, tibia and pelvis. She had femur surgery on Sept. 2 and is going to have tibia surgery in 2 days on Nov 10. We know what your going thru with the pain and how people say mean things to you. I am going to see if she will make a video also... she's staying strong. I wish you well with your surgery's

[lestatsduchess]

@heathersofia Awww thank you! If you can get your daughter to make videos, I assure you it would help other children out there suffering with this. I get lots of emails daily from people with FD and a few of them are parents looking for information for their newly diagnosed children. Perhaps your daughter might be interested in being a child advocate for FD!!

[emz8900]

you're beautiful and very brave to talk about it, don't hide yourself x

[lestatsduchess]

Hi emz, thank you so much for commenting my video with your kind words. The positivity I have received has made doing this video worth it. Blessings to you!

[mistresscharlie]

yes those who have this on the face do have a social pain to overcome, also possible identity issues, I had many emotional issues to overcome dealing with the disease in general

[mistresscharlie]

I had fd in my frontal cranial bone. I had two recostructive surgeries on my face. I feel your pain. Thank you for making these video blogs. They help me to not feel alone.

[lalacarreon123]

@bonezter05 well you are lucky! I get pain most of the time and sometimes its pretty hard. I realized I can still see the difference, especially since I got surgery recently. But I hope that you're doing good :)

[bonezter05]

@marisadam12 harvey segovia philippines =D

[bonezter05]

@lalacarreon123 hi there, i also have this condition. its located on my left maxillary. But it's painless actualy.

[GeNeSiS1O1]

hello, I'm Genesis. I'm 16 and i was diagnosed with FD on my right cheek like 6 months ago. I'm not gonna lie, its been hard. This April i will be having my first surgery for this and you video has inspired me to stay strong even if the surgery gets rid of it or not. I'm glad i stumbled into this video. (:

[lalacarreon123]

Hi, I have FD too and on my face too. I have it on all my jaw. I was about 7 when I got it (now I'm 17) and was it noticable. It's very painful, at times. But you are very brave to do this because not a lot of ppl would do a video like this. I feel happy that there is someone that has the same thing I do. I hope that everything goes well with the surgerys :)