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Genetic and Rare Diseases Information Center (GARD)


Your Question

I have neurofibromatosis type 1, and in the last couple of years I have developed severe skin itching. Do you think the itching has anything to do with NF1?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

Is skin itching a symptom of neurofibromatosis type 1?

Skin itching, or pruritus, can be a symptom of neurofibromatosis type 1. Neurofibromas under the skin can be very itchy, especially when they are growing. This intense itchiness may interfere with sleep and other daily activities.[1] A type of antihistamine medication called ketotifen has been effective in treating this symptom.[1][2]
Last updated: 7/20/2015

  • Riccardi VM. The genetic predisposition to and histogenesis of neurofibromas and neurofibrosarcoma in neurofibromatosis type 1. Neurosurg Focus. June 2007; 22(6):E3.
  • Riccardi VM. A controlled multiphase trial of ketotifen to minimize neurofibroma-associated pain and itching. Arch Dermatol. May 1993; 129(5):587-581.
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