A member asked:

Have you ever heard of the genetic disorder known as nerofibromatosis(nf) because i have nf2 and i am just looking to see if it us well known?

10 doctors weighed in across 4 answers

NF syndromes: Nf is one of the best known of the neuro-cutaneous syndromes (skin findings suggest nervous system problems) is has several distinct forms. Many are new mutations but these can be inherited in an autosomal dominant fashion. A second ncs is tuberous sclerosis.

Answered 9/12/2013

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Dr. Peter Francis answered

Specializes in Ophthalmology

Yes well known: Neurofibromatosis 1 and nf2 are well known conditions. There are many expert medical professionals to help you. Since both a genetic conditions, seeing a clinical geneticist is a good starting place.

Answered 3/22/2013

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Dr. Gerald Mandell answered

Specializes in Nuclear Medicine

Well known: NF2, bilateral acoustic neuromas, is much less common than NF1 and is characterized by multiple tumors on the cranial and spinal nerves. Tumors that affect both of the auditory nerves and hearing loss beginning in the teens or early twenties are generally the first symptom of NF2. Both can be genetic with genes localized to chromosomes, 17 NF1 and 22 NF2.

Answered 8/11/2014

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Very well known: Only about one person in 30,000 is affected, and while acoustic neuromas (often bilateral) is the most familiar presentation, the most feared is spinal cord tumors. Read up on it, because like most folks with uncommon illnesses, you'll probably need to know as much as or more than your primary care physician. A proactive, informed patient is a good patient. Best wishes.

Answered 9/20/2014

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