May is NF awareness month. Most people do not know what NF is, (aka Neurofibromatosis) making awareness month even more important. Neurofibromatosis is a genetically inherited condition that can cause tumor formation on the brain, spinal cord, and nerves. There are various types of NF (type 1, 2, and Schwannomatosis), and they can have a wide range of effects on the people that have Neurofibromatosis. Adults and children alike can have symptoms ranging from high blood pressure, to tumors and learning disabilities.
NF affects about 200,000 people in the United States, making it fairly common. Although you might not know someone that is affected by the disease, it can sometimes be shocking that you do not hear more about it in the news. NF 1 is developed/present in childhood and therefore diagnosed most commonly. Most cases of NF 1 tend to be mild but can vary and become quite debilitating. About 60% of the children that are diagnosed have trouble learning in school. It can also be diagnosed due to the presence of: 6+ light brown spots on the skin (or café-au-lait spots), 2+ nuerofibromas (tumor on nerve cell), and other types of growths. In a slightly different way, NF 2 commonly forms tumors near the ear causing severe hearing loss.
Unfortunately, there is no cure for NF, although much research is currently being conducted. Because it tends to be a De Novo disorder, (meaning it only will develop as a mutation in the fetus's genes after the sperm and egg fertilize), it makes it difficult to prevent it when having a child. That being said, once you are aware of you diagnosis you are able to self check yourself. Especially with NF 1, you can scan your body for any physical changes like bumps, or visual changes. Everyone must also have annual visits to a Neurofibromatosis professional, which holds true for all types of NF patients.
In conclusion, NF awareness month is hosted by CTF (Children's Tumor Foundation). This organization works to advance research of cures and treatments for all three types of NF and while doing that also providing support for the affected individuals and families. As May is NF Awareness Month, they are achieving another one of their fundamental and crucial goals: expanding the public awareness of Neurofibromatosis. Although May is now over it is never too late to learn more and read more! And make sure too keep spreading knowledge and information regarding NF to make your families, friends, and communities more informed.
