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Doctor insights on: Can Neurofibromatosis Kill You

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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

Dr. Gerald Mandell
167 Doctors shared insights

Neurofibromatosis (Definition)

A genetic condition characterized by cafe au lait spots, which are pigmented patches of skin, and benign ...Read more


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Can neurofibromatosis kill you?

Can neurofibromatosis kill you?

Depends: Neurofibromatosis comes in many forms and involvement. If the neurofibromas affect critical areas of function. Death is possible. Forinstance if tumor becomes so enlarged that compresses airway or blood vessels supplying blood to brain or other vital organs. In rare insances malikgnent degeneration of neurofibromas into neuofibrosarcomas can occur. Some patients develop other lethal tumors.. ...Read more

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What are the tests for neurofibromatosis?

Clinical diagnosis: The best test for neutofibromatosis is a physical examination by a practitioner familiar with the nih criteria. ...Read more

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Please help me? What is neurofibromatosis?

Neurofibromatosis: Neurofibromatosis or nf is an inherited disorder or one that occur spontaneously in a patient. It is a disorder that involves the nerves, structures that carry information from the brain to outlying parts of our bodies. In nf there are tumors, which in most cases are benign that arise from these nerves. The disease is extremely variable in how it affects a patient. ...Read more

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I have neurofibromatosis. What should I do?

Get information: Http://www. Ninds. Nih. Gov/disorders/neurofibromatosis/detail_neurofibromatosis. Htm

This is website with a lot of accurate information, ...Read more

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My friend has neurofibromatosis. What is that?

My friend has neurofibromatosis. What is that?

NF resource: Here is a great resource where you can find lots of answers about neurofibromatosis:
http://www. Nfnetwork. Org/ ...Read more

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I'm scared I might have neurofibromatosis, what symptoms should I be wary of?

Cafe Au Lait spots: Which look like this: http://www. Sciencephoto. Com/media/259913/enlarge. Also, the spot must appear, that is, not be there from birth (that would be a birthmark). ...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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Can I donate plasma if I have neurofibromatosis?

Can I donate plasma if I have neurofibromatosis?

Yes if: Plasma donors should be at least 18 years of age and weigh at least 110 pounds (50 kg). Must pass two, separately administered medical examinations, a medical history screening, and testing for transmissible viruses, before their donated plasma can be used. Neurofibromatosis does not have infectious etiology. Usually genetic or spontaneous mutation causes neurofibromatosis. ...Read more

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Sir, lumps are only symptoms of neurofibromatosis?

Many others: There are a number of criteria necessary to make the diagnosis of neurofibromatosis. A relative with the condition, neurofibromas (fleshy bumps), more than 5 brown patches (cafe au lait spots) > 1.5 cm in adults, freckling under the arms and groin, and eye changes (can be diagnosed by an ophthalmologist). There are also many different forms of the condition. ...Read more

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I have neurofibromatosis. Will tanning make my condition worse?

I have neurofibromatosis. Will tanning make my condition worse?

Sun protection: Sun exposure can make cafe au lait spots darker, but does not mean that the NF is getting more severe or progressing. The problem with tanning is sun exposure. Melanoma has been reported in few patients with nf1, mainly females. Protection from sun is advised to patients with and without nf. ...Read more

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Is there a connection between sarcoidosis and neurofibromatosis?

No: Neurofibromatosis is a genetic condition that affects patients from birth. Sarcoidosis is an acquired disease, albeit with some genetic predisposition. The two are not linked however, as far as I know. ...Read more

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Can neurofibromatosis type 1 progress to neurofibromatosis type 2?

Can neurofibromatosis type 1 progress to neurofibromatosis type 2?

NO: Tow distinct gene mutations. Neurofibroma nf I & nf ii are both inhirted tppe I will show cutaneous, neurological and ortho malformations. Tend to be non cancerous nf ii is less frequent (i in 40000) less skin lesions more neuroligical tumors, like maningiomas, bil aucoatic neuromas, schiwanomas, gliomas is part of misme syndrome. ...Read more

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Is it possible to get a neurofibroma without having neurofibromatosis?

Yes.: It can occur spontaneously or it can be familial; isolated or part of a syndrome; or it can be associated with other conditions. ...Read more

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What are types of neurofibromatosis besides acoustic neurofibromatosis?

What are types of neurofibromatosis besides acoustic neurofibromatosis?

3 major types: (nf 1 consists of two or more neurofibromas on or under the skin, or one plexiform neurofibroma, café au lait spots (pigmented, light brown macules, freckles of armpit and groin, lisch nodules (hamartomas of iris), optic nerve gliomas and skeletal deformities. Nf2 centrla nf with bilateral acoustic neuromas (balance, hearing, ringing ears). Nf3 schwannomas develop cranial, spinal and peripheral nerves. ...Read more

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I have Neurofibromatosis. Is it normal to have fluid come out of tumors?

Unusual: Most are quite firm and solid.
I can envision one with bleeding, infection, or necrosis having some fluid but that would be at the unusual end of the spectrum.
Some other cyst also could be intermingled with a neurofibroma ...Read more

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Is there any difference between neurofibromatosis and elephant man's disese?

Unknown: Despite multiple attempts at diagnosis, there is no sure diagnosis of the disease joseph merrick suffered from. It was thought for many years he had nf, though he may have had proteus disease. There are numerous conditions that can cause extreme deformities that look similar. ...Read more

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Can you tell me about the life expectancy of a person with neurofibromatosis type 2?

Shortened: Life expectancy for people with NF-2 is generally shortened compared to non-affected and NF-1 affected people, but it is also highly dependent on a number of potential conditions, and available treatments. I've added a link that is more comprehensive, and I hope it helps.


http://www. Ctf. Org/pdf/brochures/NF2_Info_for_Patients_Families. Pdf ...Read more

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What percentage of neurofibromatosis is random, in which no family members have it but you?

Rare: Non genetic mutation, causing neurofibromatosis is rare. In nf-1 chromosome 17 is involved nf-2 chro. 22 is involved, autosomal dominant transmission that means 50% chances the offspring will inherit the disease. ...Read more

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Doctors think my child has neurofibromatosis. Right now...It looks like a mild form, but what can I expect in the future?

Doctors think my child has neurofibromatosis. Right now...It looks like a mild form, but what can I expect in the future?

Variable: I do not know age of child. Nf is very variable in expression and progression. Nf1 can affect the skin (neurofibromas, cafe au lait spots), eyes (gliomas), bones (scoliosis and pseudarthrosis)nerves with neurofibromas, and a person's general constitution (adhd and mental retardation). The more severe cases are usually detected earlier in life. Nf2 includes ependymomas, meningiomas, acoustic neuromas. ...Read more

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Is there anything that can be done about neurofibromatosis? Either to slow or stop the growth of new tumors? Reduce the size of existing ones?

Not usually: Many women with nf1 note increase in growth of preexisting tumors during pregnancy.Adults with nf1 acquire more tumors with age. Nfs develop gradually over time, may continue to grow in size for period of time. Nothing person can do to prevent. Nf. May be removed by surgery or occasionally by laser. If neurofibroma is removed, may or may not grow back. No effect by foods, smoking, caffeine or heat. ...Read more

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Is neurofibromatosis a cancer?

Is neurofibromatosis a cancer?

NO: Nf is a genetic disosrder that can predispose patient to tumors, mostly benign such as neurofibromas tumors of skin and other tissues. Plexiform neurofibromas are deeper tumors that affect nerves. These rarely become malignant. Other tumors can involve optic nerve (gliomas), acoustic nerves (neuromas), meningiomas, astrocytoma brain, intestinal tumors (carcinoids)and adrenal pheochromocytomas. ...Read more

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Is there a defective gene in neurofibromatosis?

Is there a defective gene in neurofibromatosis?

Mostly genetic: Neurofibromatosis is a mostly inherited problem or mutation with degrees involvement from mild to severe. NF t autosomal dominant pattern of inheritance. People are born with one mutated copy of the NF1 gene in each cell. In about half of cases, the altered gene is inherited from an affected parent. Remaining cases result from new mutations in the NF1 gene, ...Read more

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What is neurofibromatosis?

What is neurofibromatosis?

Nerve ; brain tumors: Neurofibromatosis, inherited problem, with varying degrees of involvement from mild to severe. Neurofibroma is benign tumor that originates from the nerve cells. Tumors 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 and sometimes bone deformity. Type 2 usually 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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What is the history of neurofibromatosis?

Long history: Von Recklinghausen's (NF1) has pictorial history, dating back to thirteenth century. In 1768, Akenside published a scientifically-based description of NF1, recognizing that scholars such as Parè and Aldrovandi, in fact suffered from a disorder of the nerves. Neuromas of NF1 were first detailed by Smith in 1849, but Frederick von Recklinghausen is credited with its discovery and coined the name. ...Read more