Fibrous Dysplasia and Me

[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.

[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 :)

[bonezter05]

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

[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 :)

[marisadam12]

my dear lestatsducches, cheer up and forget about your face. The important thing is what is there inside you. Change the way you look at yourself. You look pretty to me. Have you seen Mauricio Saravia's videos here? Please, check them up. He never hid himself. He faced everybody courageously and he was even invited to many Red Carpets in Hollywood where he was photographed, filmed and interview by the media. He passed away on Dec. 12/08 because his MAS affected his whole body.

[bonezter05]

@marisadam12 harvey segovia philippines =D

[marcwa74]

This is the second video I've watched of you, very good post.. Again Thank you again for posting this.... Those of us that have FD already go through the physical pain associated with the disease but for those of us that also have it in our facial bones and skull there can be a social pain that we deal with as well....

I am very proud of you for doing this... And making people aware of FD and also getting to know you...

Hit me up on Face Book Lealand Smith Nashville TN

Take care

[MsRobbie64]

Hi Please add me on Facebook Robyn Paraskos Australia

[holycow654321]

thank you for coming forward and educating people all over the world.

[MsRobbie64]

Hi I feel yr pain I have Fibrous Dysplasia of my face on the right side, I have had 2 operations to remove bone and tumours. Dr's can't help, I'm in so much pain daily suffering from facial migraines.

Robyn - Australia

[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!!

[kramsey2006]

Well, Tami, I finally did it. It's an awkward video, because you know that I hate talking about it. I still can't believe that you were so brave to do it! But damn it, if you can do it, I can do it, right? Besides, if I can pay forward the feeling of not being alone to one person, like you did with me, then I've done what I'm meant to do. Besides that, Peanut needs to know what it truely means to be brave and not to let a disease own you. I love you babe! Thanks. kramsey2006 (look it up)

[rob205rob]

I have fibrous dysplasia of the skull; only symptoms are constant headache x 4 years. Please feel free to contact me ANY TIME if you also have this disease even if it's months from the time I posted this

[rob205rob]

I have fibrous dysplasia of the frontal bone. I am being given bisphosphonates for pain. Most doctors don't know about this treatment, you will need to see an endocrinologist at a teaching hospital for pain management with FD. If the mass is enlarging you may need surgery

[karibellflame]

Have you had surgery? the doctors told me that the disease will burn itself out in the late teens to early 20's. My daughters growth returned somewhat, not bad, I doubt she will reqiure more surgery. I hope you are managing your pain, please let me know how you are doing. I never even knew this condition existed until my childs diagnosis in 2004.

[rob205rob]

I have not started on the bisphosphonates yet. I am scared to get the drug in the vein. I haven't had surgery yet.  Write me anytime.

[karibellflame]

my daughter had this on her temporal bone, she had surgery and is doing ok. You look terrific, regardless of this condition.

[BlueFirefly010]

Its really not thats bad looking you are still very beautiful honestly most likely people will always find something to tease someone about wheather or not you have this disease. Some people are just mean like that..and monster? honestly if anyone ever said that their a total idiot. and btw the turning your head from the camera thig never works for me XD So I just look strait on I don't give a damn neither should you people that matter will accept you the way you are.

[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!

[BlueFirefly010]

I have this as well. It is also in my left jaw I was diagnosised with it in 6th grade and so far I've had about 4 surgeries on it. My doctors say that once I'm somewhere between 18-23 when my growth plates close they'd try to do a bone graph. aka take part of the bone from my leg and replace the infected bone with that. I wanna know does it cause u a lot of pain? Because it does for me...a lot of pain..You have a lot of strength and courage I admire you for that :) Good luck..

[lestatsduchess]

Hi Blue. Yes this does cause alot of pain and sadly has caused me to rely on pain medications just to get through most days. Since this video was done, I had a surgery to re-align my jaw and my jaw was wired shut for 2 months. I think my surgery count to date is between 4-6 (I've lost count). But it keeps coming back and has since returned yet again. My FD was found when I was 18 or so. I am 30 now. Stay strong! My prayers are with you!

[NutNapalm]

Lou Gehrig's disease?

[lestatsduchess]

No, this is called Fibrous Dysplasia.

[grimwolf37]

I have fibrous dysplasia. Itook 40 years to find out that Ihad this. I know what you feel and how people respond to you. hall0ween_angel

[lestatsduchess]

Thanks for watching the video :)

[rob205rob]

I also have a fibrous dysplasia lesion in my skull just above my eye. I don't have physical deformity, my only symptom has been a 24/7 headache for the past 3 years. I hope I can find someone to relate to, I don't do much anymore but sit by the computer

[lestatsduchess]

Keep up the faith rob!

[hollysterical]

To be honest, I don't even know you but I can see what an incredible person you are. To be able to go past the difficulty in drawing attention to this disease, you have optimism and reply to everyone that supports you. That's really nice. Don't even worry - it's just an obstacle in life, nothing more. You're very unique.

[lestatsduchess]

Thank you so much Holly, that means alot to me, I am very glad to be here and able to help others :)

[hollysterical]

God Bless You.

[lestatsduchess]

Thank you holly :)

[quarf53206]

I was recently diagnosed with Fibrous dysplasia in my skull.

[lestatsduchess]

Hi Quarf, if you have a MySpace profile, message me and I will send you my profile, would love to speak with you.

[XxForsakenDreamsxX]

i have mobius syndrome on the right side of my face which is my 6 and 7 nerve didnt grow, so iused to not move or smile on the right side of my mouth, i got a muscle transplant so i cant smile now, but i still cant smile normally. i have been called fucked up face practicly my whole life at school,so i now how its like to be isolated, and i isolate from others cuz im super shy

[lestatsduchess]

Don't allow others to force you into seclusion. They are the ones who have the problems. Because you are unique, that makes you one of God's special angels, and the mean people are just jealous that they are not. Chin up sweetie!

[yomomma31]

I have it on my left jaw/mandible. I never had a date since the incident. I commend you because I, too, try to hide it. :(

[lestatsduchess]

It is hard to live life with this disease, but eventually you have to fight it and not allow it to control you :) My prayers will be with you! Thank you for commenting.

[blkgryphon]

Hey Duchess,

Just thought I would check in to see how you're doing. You have not been forgotten, and your many friends out here would like to hear more about how you are these days. God bless,

Susan

[lestatsduchess]

Hi Susan, I am doing good. Still seeing my doctors and taking it one day at a time. Thank you so much for messaging me, have a blessed day!

[lestatsduchess]

Thank you to everyone who has recently commented this video with your kind words. I greatly appreciate them. I am working on doing the updated video that I have been mentioning. My health has kept me from doing so, but I will get it done. If anyone has FD and wishes to speak with me, send me a message and I will reply with my email address. Take care everyone!!

[flightcontroller]

it is a horid deformity!!! i had it on my forehead and had surgery last november. they still dont know if it is gone for good because it may grow back. nearly four months on im still in severe pain and like she said it is very painful! thanks for this site miss, its great help :)

[lestatsduchess]

Flight, how are you getting along these days? Any better?

[Coden11]

came across this by accident.  you are beautiful and not a monster at all!

[shellcraig]

Thank you so much for sharing about your fibrous dysplasia. I just found out I had it (at age 48). It is so hard to find other people out there who have it. I love your blog and your courage. One of my greatest fears is losing the bone where I have it and thus also looking different. I wish you the best in your surgery. Thanks for your bravery -- you made my day!

[lestatsduchess]

Shell, if you have a MySpace, please contact me, I can give you the URL to my group over there and you can meet some wonderful people.

[BourbonOclock]

I just found your video by accident, but all I have to say is this.. You are beautiful, inside and out. Anyone who tries to tell you otherwise is just ugly on the inside, and should take a long hard look at themselves. Just stay strong and everything will be awesome.

There is way too much beauty in the world to waste time focusing on the negatives.

[lestatsduchess]

Hi Bourban, ty for your kind words, I appreciate them alot, thanks for commenting :)

[o0TheNameless0o]

Wow...

I'm not even really sure what else to say.

I think you're beautiful and you should never try to hide. But more than anything I admire your amazing personality and strength. I'm not religious, but they say God gives the biggest challenges to those he believes can handle it.

You're handling it and then some.

Rock on, you've got all my support, sweetness. <3

[lestatsduchess]

TY Nameless, I try, that's about all I can do, ty for the comment and kind words! :)

[blkgryphon]

Dear Lestatsduchess, I just came across your video by chance, and I want to tell you that you are a beautiful girl, inside and out. The courage and warmth in your voice and eyes is compelling and the beauty therein far outshines the shape of one small part of your being. You deserve nothing but admiration, respect and love -- all of which you will find in this world. - Susan

[lestatsduchess]

ty so much blkgryphon, that truly means alot to me, thanks for viewing my video :)

[Phalaenopsis1]

Hi. How brave from you sharing your story so far and actually showing people what kind of disease FD is, what kind of life we - sufferers from FD might lead. You're making kind of "public education" about FD, together with sharing your hopes and fears. Great deal of work! You're a kind person and fighter, everyone can see, so please don't give up! You have such a nice sounding voice. I really hope that next op will make your face look the way you would like it to be. Hang in there!

[lestatsduchess]

Thank you so much for your kind words. Trust me, youtube has help alot with my way of thinking towards myself. I have received alot of support from doing this video. Thanks for watching! Hugs!

[LoChloFacade]

Thanks for having the courage to speak out - you've no idea what it's like to finally come across someone else suffering from FD... I was diagnosed some years back, although my case is minor in comparison. I wish you all the best with your operations - God bless you and the warmest wishes from the bottom of my heart. Perhaps we could stay in contact? And please don't ever forget, you're gorgeous no matter what!

[lestatsduchess]

Hi LoChlo, if you have a Myspace and would like to keep in touch with me, I'd love to hear from you. Send me a message through youtube and I will give you the link to my profile. Take care and hugs!

[dialatedmcd]

omg now im really scared... i've slowly grown leg length discrepancies, a deformity between both sides of my ribs, and now my chin... I haven't told ne1, but latley i've noticed my nose, eyes, and lips seem a little off.. this is why this is such a torturous disease, it lets you live life as a normal person for many years and then you slowly become unsymetrical... how old are you? how fast did it progress?

[lestatsduchess]

Hi dialatedmcd. I'm 28 yrs old. It took 6 years for it to get to the point of this video. In February I underwent my 3rd surgery to correct it which I talked about in this video, in June I am having a 4tf, to re-align my jaw that is crooked from the bone growth. If it's in your face, PLEASE see an Oral-Maxillofacial Surgeon. An Orthopedic Doctor can help with your leg. But PLEASE get it checked. If you catch it early, you have a wonderful chance of recovering from it. God Bless!

[lestatsduchess]

dialated, do you by chance have myspace? i would love to keep in contact with you. my main goal is to help as many as i can. please email me through youtube and i will send you my myspace url. hugs!

[rowdyraven2003]

Just want to say how brave you are sweetie.. Ty for sharing..your truly very beautiful.. I love the movie mask.. and my little daughter thinks Rocky is so cute..

beauty is in many forms.. all the best.. xoxo

[lestatsduchess]

Hi rowdyraven2003, thank you for your very sweet comment, it truly means alot. My step-brother before he died, looked exactly like Rocky, so much people even called him Rocky. He had the same disease. Mine is the sister disease to that. Thank you again, have a blessed day!

[PhrAiLGuitarist]

It doesn't look anywhere near as bad as I'm sure time has made you feel about it. This was definitely a brave move... but I also hope you're prepared for potentially having to deal with comments from the true scum of the earth. Thanks for sharing this part of your life - I think you'll find more of a support group out of all of this than brash people making rude comments. Best of luck. =)

[lestatsduchess]

Thank you. I have just gone through a major surgery on the 1st of February and I have another surgery in June. So I will be posting an update video soon. Thanks to you all for the kind comments! Many blessings to you :)

[lynbopp]

You are beautiful! Thank you for sharing your experience. My son has osteofibrous dysplasia of the tibia and has has two surgeries in his short 7 years of life affecting his ability to walk and play like a normal kid. His post-surery pain, too, was very serious. You're not alone. Even though it's rare, the internet helps eliminate some of the isolation. Hang in there! You're doing great!

[angiesixxx]

you´re so brave to do this..i really aprecciate the fact that you wanted to share this..<3 kisses

[lestatsduchess]

Hi angiesixx, thanks for commenting! That was so sweet.!