very few people know about my condition when i talk about it so here, have this,,

neurofibromatosis type 1 (NF1), an info thread:
neurofibromatosis is a neurological condition affecting 1/3000 people that causes tumors to grow on nerves. there are three types, type one being the most common, which is what i have. it will be what i refer to in this thread.
the tumors experienced by people with NF are generally benign, or noncancerous. however, depending on size and location, they can be rather painful. many people with NF live with pain on a daily basis.
there is no limit to the amount of tumors a person can have, and they can grow ANYWHERE on the body.

tumors that people get from NF are referred to as "fibromas." they are usually soft lumps that are visible on the skin. some are hard and underneath the skin.
fibromas are usually small and stop growing after a while, but some become so large that they invade other tissues and become inoperable. keep in mind that they grow on NERVES and have a significant blood supply, so operating on them is risky.
so, people with nf1 deal with tumors, but is there anything else? well yes.

neurofibromatosis is known to be linked to many things, including scoliosis, autism, and epilepsy. many people with NF1 are nearsighted or vision impaired.
diagnosis - typically at birth nowadays. 6 cafe au lait spots (brown spots) are a diagnostic criteria in newborns with NF1. this was how i was initially diagnosed, aside from having a parent who also has NF1.
prognosis - generally people with NF1 have the same life expectancy as the general population, and small tumors can be removed with surgery. however the quality of life can be low in certain individuals.
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