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Doctor insights on: Best Neurofibromatosis Treatment

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Help! Is it possible to have a lot of cafe au lait spots and not have neurofibromatosis?

Help! Is it possible to have a lot of cafe au lait spots and not have neurofibromatosis?

Possible: NIH diagnostic criteria for NF1 with two or more of following features:1)6 or more café-au-lait macules over 5 mm in diameter prepubertal individuals over 15 mm in greatest diameter in postpubertal..2) 2or more neurofibromas or one plexiform neurofibroma.3)Freckling in armpit or groin areas4)Optic glioma (optic nerve tumor)5) > 2 Lisch nodules(iris of eye)6)typical bone lesions 7)1deg relative nf1 ...Read more

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Dr. Gerald Mandell
160 doctors shared insights

Neurofibromatosis (Definition)

Neurofibromatosis is a genetic condition characterized by caf_ au lait spots, which are pigmented patches of skin, and benign ...Read more


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Is there a cure or treatment for neurofibromatosis?

Is there a cure or treatment for neurofibromatosis?

Neurofibromatosis: There is no cure for neurofibromatosis and the goal of treatment is to relieve symptoms. Painful cutaneous and subcutaneous tumors and those that occur on visible areas of the body may be removed surgically. Surgery also may be performed to remove schwannomas and nerve tissue tumors (neurofibromas) that cause pain, sensory loss, and loss of function. ...Read more

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Are there any proven effective treatments for neurofibromatosis?

Are there any proven effective treatments for neurofibromatosis?

Not yet!: No cure. I would however recommend seeing a dermatologist. They can help monitor for other associated conditions in addition to the skin. There are different subsets and severities of neurofibromatosis (nf). They can help make the diagnosis, excise neurofibromas and coordinate care if needed (ophthalmology, neurology, ent, orthopedics, genetics). ...Read more

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How do i cope with neurofibromatosis ?? Is it really not curable??. Are there any treatments available??

No cure per say: There is no "cure" for neurofibromatosis and management is mostly geared at surgical resection of symptomatic tumors. There are also different variants of neurofibromatosis such as type 1 and type 2 that clinically manifest in different ways. ...Read more

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Can neurofibromatosis have a cure someday?

Can neurofibromatosis have a cure someday?

Hopefully Yes: We have learned much about neurofibromatosis (nf) over the years . As our understanding grows our treatments and possibly a cure will come. Our understanding is advancing ever more rapidly in the last few years. ...Read more

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What are the best ways of coping with neurofibromatosis?

Medical followup +: Regular medical checkups should be done. If you have neurologic abnormalities, get periodic examinations. Keep a positive attitude. Stay as active as you can. Think about contacting others with your problem, such as a neurofibromatosis support group (check online). ...Read more

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Is there a cure for neurofibromatosis?

Is there a cure for neurofibromatosis?

No: There is no cure for neurofibromatosis and goal of treatment is to relieve symptoms. Painful cutaneous and subcutaneous tumors and those that occur on visible areas of the body may be removed surgically. Surgery also may be performed to remove schwannomas and nerve tissue tumors (neurofibromas) that cause pain, sensory loss, and loss of function. ...Read more

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My child has neurofibromatosis. What is the best way to explain it to the other kids?

My child has neurofibromatosis. What is the best way to explain it to the other kids?

Nervecell overgrowth: Neurofibromatosis is inherited problem with varying degrees of involvement from mild to severe. Neurofibroma is benign tumor that originates from the nerve cells. This tumor usually arise from nerves in the skin or jut under the skin.Type 1 usually appears in children with brown flat skin spots, freckling in armpits, and soft tumors under the skin. Other rarer types involve more brain tumors. ...Read more

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Could anybody get neurofibromatosis?

Congenital condition: Neurofibromatosis is an autosomal dominant genetic disease, meaning if one of your parents has the disease you have a 50% chance of inheriting the disease. There are also instances of spontaneous mutation in about half of cases where an individual has the disease but it is not seen in family members. Either way, you are born with the condition, but may not see symptoms until later. ...Read more

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Is neurofibromatosis a rare disease?

Is neurofibromatosis a rare disease?

Define rare: At 1/4000 births this is relatively common compared to many genetically influenced afflictions. About a 3rd are new mutations and the others are passed from an affected parent to half their offspring. ...Read more

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