Discussions By Condition: Rare Disases

Polystotic Fibrosis Dysplasia- Anyone have it?

Posted In: Rare Disases 1 Replies
  • Posted By: me'shel
  • October 30, 2009
  • 04:52 AM

Does anyone out there have multiple non ossifying fibromas in their body or know of someone that does? Have they caused you to have multiple pathological fractures? My son has broke both his Left and Right Femurs due to pathological fractures from NOF's. He has two more NOF"s they found in is right and left femur up towards the head. They are almost symmetrical placed of both side. Pediatric Orthopedic said he has never had a case like this where a patient has multiple NOF's or a patient that has had two pathological fractures due to NOF's without their being an underlining cause or secondary diagnosis. Help. Would love to hear any advice or stories. Does this sound like polystotic fibrosis dysplasia (PFD). Waiting to meet with Stanford Doctor for more answers right now.

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  • Does anyone out there have multiple non ossifying fibromas in their body or know of someone that does? Have they caused you to have multiple pathological fractures? My son has broke both his Left and Right Femurs due to pathological fractures from NOF's. He has two more NOF"s they found in is right and left femur up towards the head. They are almost symmetrical placed of both side. Pediatric Orthopedic said he has never had a case like this where a patient has multiple NOF's or a patient that has had two pathological fractures due to NOF's without their being an underlining cause or secondary diagnosis. Help. Would love to hear any advice or stories. Does this sound like polystotic fibrosis dysplasia (PFD). Waiting to meet with Stanford Doctor for more answers right now.Not sure if this is helpful but I work with some who's son was diagnosised very young with a rare brittle bone disorder. They have gone through a great deal with him, but he is doing well in college now. If this sounds the same or if you want more information, email michele-fox@comcast.net
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