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Fibrodysplasia? Neurofibromatosis? Please can you help me with a medical question? I am very worried about a dear friend. :(?

Please can you help me with a medical question? I am very worried about a dear friend. :( I recently learned more about a condition she has, and am very worried for her.

Apparently they don't know exactly what it is, but she has an outgrowth or tumor of bone growing from her skull and it is pressing on her brain and down into her sinus, which is potentially very dangerous. It is apparently altering her personality, causing her migraine headaches, and I guess possible brain damage? I don't know. I am very worried.

I was told that this was called "Fibrodysplasia", but that can't be right because I looked that up online and that is apparently a disease that causes the entire body to become paralyzed with uncontrollable bone growth, and she doesn't have that.

She also apparently has a benign tumor in the back of her neck, I was told this could be "Neurofibromatosis".

Please, I want to help her. If anyone knows any information that could help her or knows of any procedure or treatments I could suggest for her, tell me. Apparently her doctor thinks nothing needs to be done at this time, but I feel quite differently. She is clearly suffering greatly. Thank you. :(
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Avatar universal
Can anyone please help with this?
389974 tn?1331015242
What they probably meant is "fibrous dysplasia", not fibrodysplasia (full name "fibrodysplasia ossificans progressiva")

Here is a non-profit web site that describes more about this rare disorder. The FAQ should answer your questions.

http://www.fibrousdysplasia.org


Sorry to hear about our friend.
Avatar universal
MEDICAL PROFESSIONAL
Hi,
How is your friend? The neurofibromatoses are genetic disorders of the nervous system that affect the development and growth of  nerve cell tissues. These disorders cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities. Treatments for both NF1 and NF2 are presently aimed at controlling symptoms. Surgery can help some NF1 bone malformations and remove painful or disfiguring tumors> But there is a chance that the tumors may grow back and in greater numbers. Surgery, radiation, or chemotherapy may be done. For NF2, surgery, radiation, and if the tumors are not progressing rapidly, the conservative approach of watchful waiting may be done. This may be the approach of your friend's doctors.  I recommend that you talk to her doctors and clarify their working diagnosis. Discuss their management plan to ease any worries. Take care and do keep us posted.
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