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Ciampi1
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About Me
I am a legal guardian of a 14 year old that has been diagnosed with Fibrous Dysplasia and they are still testing to see if she has the McCure Albrite Syndrome(sp)
I am a legal guardian of a 14 year old that has been diagnosed with Fibrous Dysplasia and they are still testing to see if she has the McCure Albrite Syndrome(sp)
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Close Fibrous Dysplasia
We have been trying to get help for severe headaches. She had a clear CT scan a few months ago so I had to take her to a different ER and Lie to them to get it repeated so far we are in a bad spot. there seems to be no help and no answers. We are in the process of trying our 3rd hospital. She has the leason in her skull on the back of her sinuses. The thing is surgery is risky because it is behind her eyes. Now the other day they found a leason on her left tibia. We are all at a loss right now.
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