A member asked:

When does neurofibromatosis symptoms start to develop?

5 doctors weighed in across 3 answers

By age 5: Over 99% of neurofibromatosis (also called von recklinghausen's disease) victims will show signs of the disease by age 5. So if you're older than that you almost certainly don't have it!

Answered 10/22/2019

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It varies: Signs of neurofibromatosis type 1 (nf1) can appear before birth or may not be apparent until well into adulthood. Cafe-au-lait (that's french for coffee with milk) spots are often the first thing to be noticed in children; usually more than 5 spots that are bigger than 1/2 cm. Nf2 is a completely different condition with hearing loss or cataract often the first symptom in the late teens/early 20s.

Answered 11/17/2015

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Dr. Gerald Mandell answered

Specializes in Nuclear Medicine

Sometimes at birth: Several signs of nf, the main one six or more flat brown spots over 5 mm in greatest diameter in children and over 15 mm in greatest diameter in post-pubertal individuals, two or more soft nodules or neurofibromas or 1 plexiform neurofibroma, freckling in the axillary or groin regions, tumors of optic nerve, gliomas, bony abnormality such as scoliosis, bone overgrowth or congenital fracture.

Answered 11/28/2017

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