Tips with Fibrous Dysplasia

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Category:

Science & Technology

[heathersofia]

Hi. I'm not sure how old you are but the pediatric orthopedic staff at U of M Motts Children Hosp. are awesome!!!!!My 12 yr.old daughter was diagnosed w/FD in Aug 09. She had femur surgery Sept 1,09 and we are in the hosp. now for her 2nd surg. on the tibia. She is doing great!!! we were actually horseback riding 2 nights ago before her surgery! Also she has not and will not be taking any of the meds you may have heard about. Good luck to you. The UofMich dr's have experience with this.

[SexyPenguinOZ]

i'm 19, and has had FD since i was 13, well found when i was 13, the weds are pain control, alot of FD pain is related to hormones and growing pains, your daughter may experience it when she hits pubity, or not, she may be one of the lucky ones that doesn't experience the pain =], and biphostonate treatment medication are for people like me who can't have the surgery

[SexyPenguinOZ]

, but its great to hear she is living her life! and so am i, i'm a music uni student, i used to play piano, but FD stopped that but now i sing, and you can see my videos of that, but thanks for the comment, and my doctors know all about FD aswell, though i'm not in hospital anymore, i was on the Childrens hospital here in Sydney, and they were great, but now i;m too old for them and they have done the best they can, i now live out of home and travel the world singing =]

[kramsey2006]

Thank you for the suggestions. One thing that I would like to find out more about is that some of the websites (and even a few of my doctors) have said that FD while pregnant can grow due to the hormones. Can you see if you can find anything out about that? Again, very, very helpful. It's pretty sad that you know more about this than most US doctors! You're hired!

[SexyPenguinOZ]

from what i know, it shouldn't really, but it can happen, but most likely you will find yourself in alot of pain like i said, and there is a chance that your bone will change shape, but shouldn't really "grow" if that makes sense =]

[helEFK]

I think that was awesome :) Especially the bit about the medication and having to wait 10 years to have a baby! wow.. that seams like a big deal, especially when there is no guarantee that the drugs will even help.

[SexyPenguinOZ]

@Pandanomnoms FD can be found with a simple x-ray.

[Pandanomnoms]

.... are but i have skin discoloration called Café au lait.

[Pandanomnoms]

My lower back has been hurting insanely bad off and on since i was little, my mum would tell me it was because i didn't move enough but i'm pretty sure thats not it anymore. Its gotten to the point where i almost cant walk after work. I will sit down for a bit because it will hurt and i almost cant get back up. Its concerning me because every so often i will get these major pains to the point of tears and i will have to lay down and just breath. Not sure what all the symptoms...

[BlueFirefly010]

Heat is awesome!! I've probably used gallons of hot water in Hot water Bottle thingy's. over the counter meds never help me much they're not strong enough and doctors never want to prescribe me anything stronger because I'm still young. So when it starts to swell and put stress on the nerves I just kinda have to hid in my room screaming until the pain decides to go away.