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Neurofibromatosis

Neurofibromatosis (neuro-fi-bro-ma-to-sis), is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in the body at any time.

Websites

Recommended Resources

These resources are available to borrow at the Family & Community Resource Centre. You can also check with your local library or with The Alberta Library for the availability of these resources.

You can download, print, and share this list.

  • Neurofibromatosis: A Handbook for Patients, Families and Healthcare Professionals

    Bruce Krof and Allen Rubenstein (2005)

    This book is packed with clear and practical guidance to help those with neurofibromatosis. It includes information about new genetic and diagnostic advance; the psychosocial impact of NF; and cardiovascular and endocrine abnormalities.

  • Thriving with Neurofibromatosis

    Kristi Hopkins (2005)

    For some, neurofibromatosis is as clear as the tumors on their face. For others, it hides beneath the surface, creating tumors that destroy hearing, vision, and more. Most people with NF, or any of a thousand other genetic disorders, focus on surviving from day to day. In her book, Kristi Hopkins focuses less on surviving and more on thriving with NF.

  • Still Emily: Seeing Rainbows in the Silence

    Emily Owens (2016)

    At the age of 16, Emily was diagnosed with neurofibromatosis type 2 (NF2). With gentle humour and heart-breaking honesty, Emily shares her story. Slowly and painfully, she discovers value in new places, seeing the rainbows in the silence.

  • Bumpy Roads have Soft Shoulders

    Nicole Porlier (2013)

    Nicole Porlier wrote this book about her experience with neurofibromatosis. NF can affect so many different organs within the body, causing such severe complications that it can sometimes be difficult to see life in a positive way. Her goal is to give adults and children affected by this disorder the hope that one can live a happy, fulfilling life despite NF.

Contributors

Thank you to our friends from the Alberta Children's HospitalĀ for their contributions.

Disclaimer

This material is designed for information purposes only. It should not be used in place of medical advice, instruction and/or treatment. If you have specific questions, please contact your doctor or appropriate health care professional.

For more information contact the Child Health Information Specialist at 403-955-7745 or