In memory of Derek
Derek was diagnosed with NF1 at age 3.
He followed medical protocol for regular follow-up with various specialists.
His affections were mild. Throughout his life, few were aware of his condition, and he did not feel a need to call attention to it.
The malignancy that occurred was extremely rare.
Learning About NF
Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.
NF is caused by a change in a specific gene. This gene change can sometimes be inherited by a parent, or it can just happen by chance with no reason.
NF is worldwide in distribution and affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.
NF1 is not rare, it is the most common neurological disorder caused by a single gene.
Neurofibromatosis (NF) has been classified into three distinct types: NF1, NF2 and Schwannomatosis. NF is more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.
The most common type is NF1, occurring in 1:3,000 births, characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. It has a wide range of severity, but most cases of NF1 are mild to moderate.
Correcting misconceptions and misinformation:
NF is not a disease, it is a disorder. A person with a disease feels ill, whereas a person with a disorder may or may not experience medical problems. People contract a disease, people are born with a disorder.
Often when NF is publicized, as on the May 6 broadcast of Oprah, persons with severe deformities are featured. In reality, most people living with NF do not experience that degree of deformity and never will. In fact, many children living with NF look no different than their peers.
The “Elephant Man” did not have neurofibromatosis, as was commonly believed years ago. Instead, John Merrick had a genetic condition known as Proteus syndrome. Proteus syndrome affects people in a different way and is in no way the same as NF.
Funding, Research and Support
1978: The first NF organization in the world, The National Neurofibromatosis Foundation, Inc. (NNFF) was founded.
1984: First NF research program in the world was established; first grants were awarded.
1990: Gene for NF1 and neurofibrominâ, the gene product it encodes, was discovered.
2005: NNFF changed its name to the Children's Tumor Foundation, with the tag line "Ending Neurofibromatosis through Research."
To learn more:
http://www.ctf.org/
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