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What is the prevalence of Neurofibromatosis?

How many people does Neurofibromatosis affect? Does it have the same prevalence in men and women? And in the different countries?

Prevalence of Neurofibromatosis

Neurofibromatosis is a relatively common genetic disorder that affects the nervous system, causing tumors to form on nerve tissue. It is estimated to affect approximately 1 in every 3,000 to 4,000 individuals worldwide. There are three types of neurofibromatosis: NF1, NF2, and schwannomatosis. NF1 is the most prevalent form, accounting for about 90% of cases. The prevalence of neurofibromatosis can vary among different populations and ethnicities. While it is a relatively rare condition, its impact on individuals and families affected by it is significant.

Neurofibromatosis is a relatively rare genetic disorder that affects the nervous system, causing tumors to form on nerve tissue. There are three types of neurofibromatosis: NF1, NF2, and schwannomatosis.


Neurofibromatosis type 1 (NF1) is the most common form, occurring in about 1 in every 3,000 to 4,000 individuals worldwide. It is characterized by the development of multiple benign tumors called neurofibromas on or under the skin, as well as other symptoms such as café-au-lait spots, freckling, and skeletal abnormalities.


Neurofibromatosis type 2 (NF2) is much rarer, affecting approximately 1 in every 25,000 individuals. It causes the growth of tumors on the nerves responsible for hearing and balance, leading to hearing loss, balance problems, and other neurological issues.


Schwannomatosis is the least common type of neurofibromatosis, with an estimated prevalence of 1 in every 40,000 individuals. It is characterized by the development of multiple schwannomas, which are tumors that arise from the cells that surround nerves.


While neurofibromatosis is considered a rare disorder, it is important to note that these prevalence figures are approximate and can vary across different populations. Early diagnosis and management of neurofibromatosis are crucial for individuals affected by this condition.


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Prevalence of Neurofibromatosis

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Stories of Neurofibromatosis

NEUROFIBROMATOSIS STORIES
Neurofibromatosis stories
Shortly after birth in 1968 Michael was diagnosed with Neurofibromatosis 1 and has undergone 20 plus surgeries. For years Michael had high blood pressure spikes, profuse sweating episodes, pain, panic attacks and more that landed him in the ER and D...
Neurofibromatosis stories
Over the years I have had a few people ask me why I haven't given up.  This really bugs me because there are other people who don't think it is fair that persons with disabilities (or major health problems) get 'special' accommodations, or they thin...
Neurofibromatosis stories
In March 2012 my hearing got bad suddenly in th left ear.  Subsequent tests showed a meningioma as well as a vestibular schwannoma, a classic diagnosis for NF2.  Both tumours were succesfully removed leaving me with facial palsy and balance issues....
Neurofibromatosis stories
I was told at a young age I had NF, nothing more.  As I got older around 18, lumps started to appear on my body.  I went to my doctor he told me he thinks they were NF lumps, he checked to see if I had large brown spots he counted 6 and said they ...
Neurofibromatosis stories
The first time I can remember being diagnosed was at age 10.  I have several small tumors all over, cafe Au Lait spots and a couple of larger tumors. In 2010, I had a GIST tumor removed which according to my surgeon is very common with people with N...

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Neurofibromatosis forum
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