Thursday, May 1, 2014

May is NF (neurofibromatosis) Awareness Month

May is the recognized month for neurofibromatosis awareness. So just what -is- NF? Well?

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 2,500 to 3,000 births).

NF has three genetically distinct forms: NF-1, NF-2 and Schwannomatosis. They are caused by different genes and chromosomes. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for any form of NF, although the genes for both NF-1 and NF-2 have been identified. 

NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children. (Source)

Our son, Alvin, was diagnosed with NF1 on February 9, 2011. Though, we had suspected he'd had it since a few week after his birth. Alvin's NF has caused speech delays, learning delays, gross and fine motor delays, growth delays, macrocephaly, and a host of other issues. (He's also diagnosed with childhood apraxia of speech, obsessive compulsive disorder, sensory processing disorder, autism, and has a retained atypical tonic neck reflex.) In 2010, it was discovered that he had 3 small gliomas (tumors) in his brain. They are monitored with MRIs for growth. So far, we've been lucky and they have not grown. There were officially attributed to NF after his official diagnosis. In 2012, Alvin was further diagnosed with a phenotype of NF called neurofibromatosis-noonan's (NF-NS). It means diagnostically he meets the criteria for both NF and NS, however he does not have heart involvement like a true case of NS. NF-NS is thought to be 1:50,000 cases of NF.

To learn more about NF, please visit:

NF, Inc
Children's Tumor Foundation

And follow along with Alvin's Allies (our NF team) to watch his story develop. :)


♥.Trish.♥ Drumboys May 2, 2014 at 9:32 AM  

My son Sam (7) and I have NF , as well as many members of my family.
Thank you for sharing your story.
Love, light and strength to you and Alvin.

Anonymous June 6, 2014 at 7:41 PM  

My family also have it which includes 3 of my sisters my and daughter..