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Discussion:
Fiberous Dysplacia
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Hi I have FD and I want to know others who have it aswell and how it effects them and stuff like that.
Please reply.
Posted on 12/09/07, 04:10 pm
25 Replies | Most Recent Add Your Reply
Reminder: This is a support group for Fibrous Dysplasia. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Comment:
Email me when others reply to this topic help
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Reply #21 - 07/08/10  7:34pm
" I was diagnosed with FD in 2005 when I was 32. I went to the doctor because my right side rib cage was starting to bulge out. I had no pain, but I was starting to get what looked like red stretch marks on my right side. Luckily, I was able to have surgery to remove the rib that the FD was destroying. Surgery was not fun, with 10 inch incision, collasped lung, and then a lung tap two weeks after the surgery. However, I'm happy to say that the surgery was a success and I've have no other problems with FD since. "
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Reply #22 - 11/29/10  7:59pm
" After months of chronic headaches and many tests and doctors later, My son was diagnosed with FD in the clivus bone of his skull (and c1 of his spine). He has a tremendous amount of pain associated with it. I cant imagine a doctor thinking it wouldn't cause pain. What type of doctor are you seeing? We have found that doctors will admit that they are not familiar with this condition. It has seemed like a long road to get to where we are now but, We are now seeing an endocrinologist. We were referred to him after the neurosurgeon and ENT surgeons performed a biopsy. My son is about to start Intravenous "Pamidronate" treatments.
Because it is so rare, I feel it's important for us to give eachother as much info as possible. I hope you find relief and a doctor confident enough to treat you! "
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Reply #23 - 01/13/11  2:23pm
" hi my name is heather i was diagnosed withFD in 2008 4 days before my 50 Th. birthday i was taken in for a dropsy to which i was told i had FD i have had 10 operations on my cheek bone and i have now got a crumbling jaw i was told that in october threw getting a mir scan i have had 8' taken of my cheek bone and sinusitis the operations to pare the bone is good short term .but it all comes creeping back , but the secret is to keep busily and not to let it get you down easer said than done .i get very down about it as it gets me down i cry a lot when im on my own as i don't look the same as i did and i just am not the person i was but we all have to keep going till there is a cure , please give me a reply if you can as in Aberdeen Scotland im the only one with this problem ,thank you for listening Heather "
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Reply #24 - 01/14/11  1:46pm
" hi im heather i live in Aberdeen Scotland yes i have spoken to a good few people on this sight and we all suffer the head aces i to have bad headaches they say they have nothing to do with the condition but how can you have all this going on in face jaw and scull and not have headaches its all going on in the head i have it now in the jaw its sore to eat i cant get my teeth in thats horrible as i like to look after
my appearance i have had 8' taken off my cheek bone its hard but do find some one to talk to it some times helps heather hgchivas100 "
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Reply #25 - 01/14/11  1:50pm
" hi im heather i live in Aberdeen Scotland yes i have spoken to a good few people on this sight and we all suffer the head aces i to have bad headaches they say they have nothing to do with the condition but how can you have all this going on in face jaw and scull and not have headaches its all going on in the head i have it now in the jaw its sore to eat i cant get my teeth in thats horrible as i like to look after
my appearance i have had 8' taken off my cheek bone its hard but do find some one to talk to it some times helps heather hgchivas100
can some one contact me and let me know how they feel thank you "

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