For over 120,000 Americans, “NF” stands for a lifelong fight against a debilitating genetic disorder. For others, Neurofibromatosis is still a mystery.
At a recent event held outside The Alamo, San Antonio Mayor Ivy Taylor highlighted the struggles and triumphs of families dealing with NF by proclaiming May “Neurofibromatosis Awareness Month.”
NF includes a host of distinct genetic disorders that cause tumors to grow along various types of nerves. It can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.
There are three known forms of NF that are characterized by any of the following: multiple cafe-au-lait spots on or under the skin, enlargement and deformation of bones and curvature of the spine (scoliosis), tumors in the brain, on cranial nerves, on the spinal cord, or on the auditory nerve.
“We hope that more people become aware of NF and the work being done by the Children’s Tumor Foundation (CTF) to cure it. For those living with the disease and their families, this is not new information and it is an under-recognized genetic disorder,” said Mayor Taylor.
NF1, more commonly known as von Recklinghausen NF or Peripheral NF, is so pervasive it is diagnosed in as many as one in every 3,000 individuals. Scoliosis is just one way NF manifests itself. But there is also more rare versions of the disease such as NF2, or Bilateral Acoustic NF in 1 in every 25,000 births.
Notable signs of NF2 include hearing loss in teens and those in their early twenties. This is due to the propensity for multiple tumors to grow along the cranial and spinal nerves.
“It affects all populations regardless of gender and occurs more often than Cystic Fibrosis, Muscular Dystrophy or Huntington’s Disease. It is the mission of the CTF find the cure for and advance the fight against NF,” Mayor Taylor continued.
Angela Earle, a CTF program director knows all too well the daily struggles with NF as she also has a child with the diagnosis. But she is doing more than speaking about the topic, Earle rode 3,000 miles on bicycle across the United States to create awareness of NF and to support NF research.
“Despite affecting one in 3,000 people, NF is relatively unknown to the general public. I want to thank Mayor Taylor for helping to create greater awareness of NF. Awareness is the first step in supporting research to find a cure for NF,” Earle said.
Starting in 1978, CTF began as the first grassroots organization focused on finding treatments for NF. CTF has since grown into a highly recognized national nonprofit foundation spearheading the cultivating of funds and resources to end the illness.
For more information on NF, visit www.ctf.org.