Neurofibromatosis: Neurofibromatosis is a genetic disorder that disturbs cell growth in your nervous system, causing tumors to form on nerve tissue. These tumors may develop anywhere in your nervous system, including in your brain, spinal cord and nerves. Neurofibromatosis is usually diagnosed in childhood or early adulthood.
The tumors are usually noncancerous (benign), but in some cases these tumors become cancerous (malignant) tumors. People with neurofibromatosis often experience only mild symptoms. Effects of neurofibromatosis can range from hearing loss, learning impairment, and heart and blood vessel (cardiovascular) complications to severe disability due to nerve compression by tumors, loss of vision and severe pain.
Neurofibromatosis treatment aims to maximize healthy growth and development and to manage complications as soon as they arise. When neurofibromatosis causes large tumors or tumors that press on a nerve, surgery may help ease symptoms. Some people may benefit from other therapies, such as stereotactic radiosurgery, medications to control pain or physical therapy.
Mayo Clinic[1]
Links for this Special Need:
http://www.mayoclinic.org/diseases-conditions/neurofibromatosis/basics/definition/con-20027728
http://www.ctf.org/Living-with-NF/
http://www.understandingnf1.org/
Stories or Blogs from Families who have Parented a Child with Neurofibromatosis:
http://www.nohandsbutours.com/2012/10/14/thank-god-they-are-mine/
http://www.nohandsbutours.com/2009/01/24/abby/
[1] http://www.mayoclinic.org/diseases-conditions
