A member asked:

What the percentage of person who has cafe au lait spots gets neurofibromatosis?

8 doctors weighed in across 2 answers

77% if >6 CALMs: A 2009 study in archives of dermatology showed 34/44 (77%) of children under age 3 who had 6 or more cafe au lait macules (calms) were eventually diagnosed with neurofibromatosis 1 (nf1). The average # of calms for children who were not diagnosed with nf1 was 5, but 12 for those who were diagnosed with nf1. One or two calms does not mean someone has nf1.

Answered 10/23/2017

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Dr. Gerald Mandell answered

Specializes in Nuclear Medicine

Number of spots: Many people who do not have nf have a few café-au-lait spots . If a young child has five or more, at least ½ inch or 15 mm in size post puberty lookfor other signs such as neurofibromas — tumors along skin and lisch nodules, tiny, noncancerous tumors on the iris (the colored part of the eye). Consult physician to better assess individual signs for diagnosis.

Answered 6/13/2017

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