A member asked:

Please help docs! is proteus syndrome preventable?

A doctor has provided 1 answer

No: This is the actual illness that affected "the elephant man". It's a somatic mutation a clone of cells in the unborn child shortly after conception. There was a report of rapamycin suppressing the overgrowths; this seems unlikely to me and has been generally questioned. Get with a subspecialty geneticist if you have Proteus syndrome or are caring for someone who does.

Answered 7/17/2014

3.9k views

Thank

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