5 doctors weighed in:

When does neurofibromatosis symptoms start to develop?

5 doctors weighed in
Dr. Scott McLean
Clinical Genetics
1 doctor agrees

In brief: 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.

In brief: 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.
Dr. Scott McLean
Dr. Scott McLean
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Dr. Gerald Mandell
Nuclear Medicine
1 doctor agrees

In brief: 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.

In brief: 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.
Dr. Gerald Mandell
Dr. Gerald Mandell
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1 comment
Dr. Gerald Mandell
Sometimes at birth, usually during childhood, and sometimes not until adulthood

In brief: 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!

In brief: 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!
Dr. Scott Welker
Dr. Scott Welker
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